SVPP Community Blog

Jennifer Harrison

Long, long ago in the wilds of New Jersey, my then-6 year old daughter pondered the origin of life while soaking in a tubful of bubbles. I was out for the evening so she summoned my husband with her question. 

“Daddy, where do babies come from?” she asked.

My husband paused for a few moments and then responded, “Ask your sister.”

Her sister was 9 at the time.

Nobody enjoys these questions or discussions, but – alas! – they are necessary pests. Without teaching them how to make good choices and how to stay safe, we run the risk of our loved ones getting erroneous information from the internet or making it up as they go along. And as history has shown, that rarely ends well. So, after returning home that evening, I batted cleanup for my team. Informational mistakes were rectified, myths were debunked, and my little one was stunned to learn that couples do not, in fact, make babies by peeing in the same toilet. (I later informed my then-9 year old that it’s not nice to punk your sister. We all learned that night.)

I tell you this admittedly discomfiting story for a reason. As a cautionary tale to squeamish fathers? A caveat not to leave the house without a sex therapist on speed-dial?

No, I am sharing simply to highlight a prevailing truth: that most of us will do whatever it takes to avoid The Talk. 

How can we make it easier, calmer, and less traumatic to the teller as well as the listener?  Here are a few suggestions from the experts.

Don’t Shy Away From Those Words

Whoever was in charge of naming the parts of human anatomy sure did a doozy. Whether the words are embarrassing-sounding in and of themselves or humiliating because of what they signify, our private parts can be difficult to discuss.

But it is so important that we teach them! We all need to know what our body parts are actually called so we can clearly communicate with our caregivers, our doctors, and the police, if need be. Nicknames are not universal, and the on-call gynecologist may not know what we mean by “my hoo-ha.” Teach the words. They become less cringe-y as you do it.

And once you can freely throw around language like “penis,” “testicles,” and “vulva,” try to keep the giggling and eye-rolling to a minimum. While it can be bonding to share a blush and shrug with your child/student/curious neighbor, shame can be contagious. So be sure to present the facts in the most positive, upbeat light. And that means speaking those words with confidence. (I mean, we have no problem talking about that fabulous planet, Venus…)

Don’t Believe That Facts Incite Action

Among our greater fears is inadvertently introducing newer! more exciting! cutting edge! sexual information that our students can race out and replicate as if the education were a thrilling suggestion. It is, therefore,  tempting to omit addressing certain sexual acts and language that we’d rather they never learn. Like, all of it.

But the fact is, they will learn it. And if they don’t learn it, they’ll probably figure it out on their own. And if they never figure it out, they’ll just wind up hearing about and possibly doing something else we’d rather weren’t featured on their sexual menu. 

Thankfully, finding out about a sex act does not predestine its performance. On the contrary, according to sex-positive parenting expert Airial Clark, research shows that “teens who talk with their parents about sex, relationships, birth control and pregnancy begin to have sex at later ages, use condoms and birth control more often if they do have sex, and have better communication with romantic partners and have sex less often.” This is all the goal! We’ve unearthed The Secret to Responsible Sex!

Now, does that mean we should fire up “Eyes Wide Shut” and prepare to take notes together? No. (You’re welcome.)

But if your student is old/savvy enough to ask the question, they are probably mature enough to get the answer. So, when they do approach you, be honest and be frank. Give only necessary information until they are ready to hear more. And feel free to follow up with a “But I don’t recommend you do this now. It’s really only good with someone you love.” That may be the heads-up that sticks.

Find Your Cue

What if Junior never asks about sex or their private parts? What if the years tick by and we remain surprisingly, conspicuously cringe-free?

Bring it up yourself, and according to age. Experts suggest that children should learn the proper names of their body parts as soon as they begin talking. If it’s too late to catch that train, try tossing around some of those words today!

“Hey, did I ever mention that your butt is really called your anus?”

Too awkward? Then just start using them in conversation. Ask if their zipper is broken in the area of their pants “that covers your penis/vulva” or ask if their breasts are sore from that pecs workout at the Y. If they stare at you blankly, the door is open for discussion.

“...What? You’ve never heard that word before? Let’s review!”

Once a child is in middle school – or beyond – talking about sex will probably just mean filling in gaps in information they have already been collecting for months… or years. So the discussion doesn’t have to amount to scaling Everest, maybe just getting yourselves to base camp in one piece. 

There are so many great ways to work sex and anatomy into conversations; mentioning someone you know who has become pregnant (“by the way, are you familiar with how that happens?”), addressing a relationship- or sex-related scene on TV (“wow, I hope they’ve talked about their HIV status beforehand…”), or discussing an ad for tampons or condoms (“ribbed or not, this is a great way to avoid pregnancy and STIs!”). Ask if they understand what’s going on; ask if they have any questions. Sexuality is all around us, we just need to nod to it when we see it.

Include “Consent!”

The birds and the bees both have to want to do what they do, or they shouldn’t do it!

That’s the message we cannot forget to mention to our loved ones. Because the parts and processes involved in sex are important, but just as important are the respect, safety, and lawfulness of sex. 

Therefore, we need to repeat (and repeat… and repeat!) that consent is:

Mutual

Enthusiastic

Informed (they know what it is they are agreeing to do!)

Sustained (anyone can take away their consent at any point – before, during, or 30 times in!)

Awake and alert (never under the influence of alcohol, drugs, or sleep)

We must teach our kids that no one is allowed to touch their breasts, penis, vulva, or butt without consent (unless it’s by a doctor - and they can keep a trusted adult in the room with them during an exam, if they prefer). And they are not to touch anyone else’s private parts without consent. It is for their safety and the safety of those around them. Courtrooms are full of people who have committed sexual violence without understanding that what they were doing is illegal. Let’s keep our kids out of the justice system and safe.

Call for Backup

There’s no need to sweat this stuff on your own. Look online together or break open a book. Sit in on an age-appropriate sex ed. class or pair up with an equally-squeamish friend and tag team the topic. 

Talking about sex does not have to be as uncomfortable as we fear it does. Practice – along with understanding its importance – makes it a whole lot easier.

“Sex Ed. Isn’t Actually About Sex”

Per Harvard Medical School’s Center for Primary Care, sex ed. “teaches critical life skills that are desperately needed in our society,” and is not just about the mechanics of the act. A truly comprehensive take on the subject will cover healthy relationships, self-esteem, body confidence, gender equity, communication, empathy, and respect.  (And let’s not forget that repeated lesson about consent!)

It gives our students power over their behavior, relationships, and bodies.

It gives our students a voice in what happens to them, and how.

Most important, it allows our students to become the healthy, responsible, and independent people we know they can be. And we all need people like that on our team.

Jennifer Harrison

In a simpler time on a simpler Earth, when dinner came from the freezer in a silver foil tray and we slogged across the room to change the television channel by hand (unless we had a little brother – then he slogged), we would often find our favorite programs cut out abruptly, and without warning. Sitcoms disappeared mid-laugh track, Walter Cronkite’s white mustache vanished instantly into the ether. Our entertainment was replaced by a shrieking sound tone and a sequence of Technicolor stripes designed to pierce the retina on impact. The corresponding caption on-screen: “We are experiencing technical difficulties. Please stand by.”

For those of you born before the dawn of cable and thus privy to this injustice: Did you stand by?

No, you probably did not.

None of us did.

Instead, we stomped across the shag carpet and whined away to our rooms. Or we yelled for help (that’s “Daaaaaaaaad!” with 9 “a”s). Or we practiced our roundhouse into the faux oak paneling of the TV set, an attempt to upset the intrusion through sheer force. Whatever we did, it was not simply standing by. We knew that would mean surrender, and with surrender comes no change.

So, how is it that we were ardently proactive against Columbo Interruptus and the intrusion on our nightly news just to grow up into people who, well, passively stand by? And especially in times of crisis?

There is science behind it.

Research blames a social psychology theory called the “bystander effect.” It claims, the greater the number of people nearby, the less likely they are to help someone in distress. In other words, if a bunch of bystanders witness violence, it’s likely no one will help. The theory assumes that the presence of others takes the pressure off of us as individuals to act (“meh, someone else will take care of it”) while at the same time activating the idea that it is socially appropriate to behave like those around us, a la herd mentality (so their inaction leads to our inaction… which leads to their inaction… which leads to ours…).  Whatever the reason, this concept flies in the face of “safety in numbers,” making violence out in the open easier and without interruption. According to the bystander effect, we may not be pleased to stand by, but despite ourselves, we do. 

In response to this distressing proposition, there is a framework called “bystander intervention” which helps people recognize healthy and unhealthy behaviors that might lead to violence – and sexual violence in particular – and teaches them how best to intervene before the disturbance escalates. The process consists of:

1. Recognizing that violence may be occurring or about to occur
2. Assessing if intervention is appropriate
3. Deciding whether or not to take responsibility for intervention
4. Determining the safest and most appropriate way to intervene
5. Intervening

In short, if you see something, do something… but safely.

How Do We Know if a Situation is Violent or Potentially Violent?

Think of a scale – almost like the pain charts we see at the doctor’s – to measure the level of threat. On the low end of the scale, we will see healthy, age-appropriate, safe, and respectful interaction. On the high end lies highly dangerous behaviors such as sexual abuse, rape, and other forms of violence.

Between the two extremes exist inappropriate speech and action, coercion, and harassment. Getting involved while activity is still in this mid-range allows us, according to Joan Tabachnick’s Engaging Bystanders in Sexual Violence Prevention Booklet, to “intervene and reinforce positive behaviors BEFORE a behavior moves further along the continuum into something violent.” So the sooner we step in, the better we can influence the aggressor, affect the outcome, and protect ourselves and others from harm.

How Can We Intervene in a Helpful and Safe Way?

RAINN suggests a number of ways to effectively – and safely – intercede.

• Create a distraction.
• Do this by communicating with the individual at risk. Approach them and offer to go somewhere else with them, in a firm but calm way. “Hey, let’s take off and get some pizza” or “come take a walk with me over there” will provide the opportunity to exit a dangerous situation. Or simply break the tension by suggesting a game (if you’re at a party), getting some fresh air, or introducing food or drink to the situation. Sometimes changing just one element in the atmosphere is enough to redirect attention.
• Discuss what’s going on.
• Approach the person at risk and ask them directly if they need help, want you to take them away from the situation, or prefer that you stay with them. It is important not to leave the vulnerable person alone in a situation that may escalate.
• Call for Backup.
• If you feel at risk or don’t want to walk in on a heated situation alone, enlist the help of another person to help you intervene. They can accompany you in confronting the agitator, approach the person in place of you. Approaching people who have a relationship with the person at risk will give them added motivation to lend a hand.

Working Against Violence, Inc. also recommends reaching out for an adult’s help (if you are a minor), educating ourselves on types of abuse and signs that they are happening, showing care and empathy, calling 911 in times of immediate danger, and calling out inappropriate behaviors and conversations that can devolve into violence. Speaking up when individuals are endangered and speaking out when others become aggressive – or if they are acting in support of the antagonist with laughter or rumor-mongering – immediately makes you an ally. 

Too Many Options to Digest?

When in doubt, remember the Hollaback! campaign’s 5 D’s (not to be confused with Five Alive, which is a fruit juice and has nothing to do with any of this):

• Distract by creating a commotion (spill your water! Drop a bag of marbles!) or simply initiating small talk.
• Delegate by asking a third party for assistance (especially an authority figure).
• Document by taking notes or a video of the situation (in case details or verification are later required).
• Delay by offering support or aid to the person who was victimized.
• Direct – once everyone is safe – by “speaking firmly and clearly against the harassment/discrimination taking place.” However, this last approach should take a backseat to caring for the person who was victimized. Aiding the victim is more important than educating the offender in the heat of the moment.

Take to the World Wide Web

Want to encourage more youth to become active bystanders? Want to prepare your loved ones to advocate for sexual violence prevention?  Try these cyber-based programs with the young people in your life:

• NIOS: Take on Cyberbullying uses a peer education model, utilizing peer leaders to take a stand against bullying and violence among middle and high school students. http://www.niot.org/nios /lesson/ lesson-idea-%E2%80%9Cstudents-takecyberbullying%E2%80%9D
• That’s Not Cool provides resources and information on ways to intervene if a young person has a friend, family member or acquaintance who is being verbally, emotionally or sexually harassed via technology. http://www.thatsnotcool.com
• Love is Respect addresses the issues of “textual violence” and sexual harassment via technology, as well as support for bystanders on how to help a friend who may be experiencing sexual violence. http://www.loveisrespect.org/
• Circle of 6 is a smart phone app focused on the primary prevention of sexual violence and other forms of violence before the violence occurs.https://appsagainstabuse.devpost.com/submissions/4900-circle-of-6

Yes, there was little we could do to make Fonzie reappear after being bumped off the screen by the Broadcast System way back when, but we are much more empowered and prepared today to change the trajectory of escalating aggression. 

There is a right time and best place to remain a bystander. In the face of sexual violence is not one of them.

Jennifer Harrison

"Overprotection may appear on the surface to be kind, but it can be really evil. An oversupply can
smother people emotionally, squeeze the life out of their hopes and expectations, and strip them of
their dignity. Overprotection can keep people from becoming all they could become. Many of our best
achievements came the hard way: We took risks, fell flat, suffered, picked ourselves up, and tried again”

                                                                                     -Author of Dignity of Risk, Robert Perske, 1972

The Little Prince, French author Antoine de Saint-Exupéry’s traveling lad from a galaxy far from ours, fell
in love with a rose. He adored that rose with everything within him. He spoiled her with water,
barricaded her space (lest caterpillars trample her with their six loathsome legs), and – most important –
placed her under a glass globe to keep her safe and warm. It appears to be the epitome of care, this
affectionate fortification. But perhaps our petite princeling was a little overzealous (he does later admit,
“I was too young to know how to love her…”) or wasn’t properly primed for the task, as the rose
eventually expires in the soil. Could he have saved her? Was it simply beyond his sway? We cannot
know. What we do know, however (as our planet promotes evidence-based practices), is that LP’s
approach to protection is not appropriate for us. For we are not flowers, and our dreams reach much
further than can petals.
That probably sounds better in French.
But, still…

People with intellectual and developmental disabilities have goals and passions, just like their
neurotypical counterparts. They want to achieve things that may be difficult, that people may say are
over-ambitious. These dreams range from Mundane to Beyonce, but the conundrum remains the same:
how do we allow those we love or care for to take the potentially treacherous steps toward
achievement while at the same time preserving their security?
The answer is called The Dignity of Risk.

The Partnership for People with Disabilities (PPD) at Virginia Commonwealth University defines this
concept as “the right of a person to make an informed choice to engage in experiences meaningful to
[them] and which are necessary to personal growth and development.” And although there is no direct
mention of it, the risk is baked right in. Because, as we know, few pursuits are executed without at least
a little gamble. Stakes are high when we care about outcomes: hearts can be broken, as can glasses,
teeth, and bones. On the flip side, records can be broken, as can patterns, barriers, and The Proverbial
Mold. So, how are we to know when the uncertainty is worth it? Because it always is. If it’s done safely.
According to North Dakota Health and Human Services, the guiding principles of the Dignity of Risk
include:

 

1. Treating people fairly
2. Being an advocate for exercising their rights to the fullest extent possible
3. Supporting the person’s preferences and values, rather than one’s own
4. Providing supports for health and safety by using least restrictive methods
5. Being realistic with expectations

And why should we employ this approach? Simply put, because it is their right. Like all humans, people
with IDD have the right to self-determination, and require it for building self-esteem, confidence, and
empowerment. Does that mean if Cousin Leo develops a yen for skydiving we should pile on the
parachute packs and get ready to defenestrate? Not quite.

PPD explains that “rather than protecting people with disabilities from disappointments and sorrows,
which are natural parts of life, support them to make informed decisions,” emphasis on “informed.” In
short, feed the dream, but first arm the dreamer with education. This is what keeps D of R from coming
into conflict with, well, care. We have to take into account the wants, needs, strengths, and capacities of
our loved ones with IDD, as well as their family, friends, and lifestyle, then help them achieve their goals
in a safe and thoughtful way. Working with this in mind is known as “person-centered planning,” which
entails including people with IDD in all decisions concerning them - a swanky way of saying, “Nothing
about us, without us.”

To be sure, it is a delicate balance. A person’s autonomy and a caregiver’s intervention can be at odds,
and a tip too far to either end can easily jeopardize both success and safety.
Australia’s LifePlan.org of Perth recommends, “providing [people with IDD] with the tools and
information they need to make decisions effectively” as well as “knowledge and support about their
rights, abilities, and opportunities.” It is about truly working together, in which ambition is tempered
with caution, aspiration with prudence, and impulse with a healthy dose of education. In short, making
yourselves a Dream Team.
LifePlan goes on to advise:

   ● Taking a holistic approach to assessing a loved one’s needs and providing care
   ● Including families and friends in the decision-making process
   ● Focusing on strengths and goals, and working within a positive framework
   ● Supporting values, rights, beliefs, and positive relationships
   ● Encouraging choice wherever relevant and within an environment of respect
       And Virginia Commonwealth adds:
   ● Openly discuss options a person may have when they are faced with making a decision
   ● Take time to engage in multiple conversations to understand the level of risk involved
   ● Be clear about your role: What is your core responsibility? How will you use creativity and
       judgment? What is not your responsibility?
   ● Remove your own personal values and beliefs about the person’s situations and choices

It seems so easy, paring back the transparent barrier, exposing our rose to the cold and the vermin and
the wonderful unpredictability of wide-openness. After all, it just takes the strength of a few fingers to
remove the cloche. But we know how difficult it can be to refrain from fending off peril when it comes
to ones we love and after a lifetime of doing so. So, it comes down to finding that balance - a
comfortable space to settle into where each side gives a little and each side gets some, in turn - and
forging that accord. Knowing they are strapped tightly into their driver’s seat, airbags activated and all
systems go, we can sleep much better at night… and our loved ones can dream much bigger.

Jennifer Harrison

‘Twas a fate doomed from the start for those young canoodlers of Verona: woefully underage, denied
parental support, defenseless without education, and guided by poor decision-making skills. A bad
romance in iambic pentameter.

Shakespeare sure could have used The Arc. Because here, our Romeos, Juliets, and Desdemonas
(different play, but a tragedy’s a tragedy, am I right?) could have learned invaluable lessons about
healthy relationships, personal safety, and legal rights before under love’s heavy burden did they sink.
(And, man, did they sink!)

The fact is, entering into emotional or physical partnerships without education, preparation, or
discretion can leave people vulnerable to unsafe situations. So why do we prevent our loved ones with
IDD from having romantic relationships instead of preparing them for the potentially dangerous
possibilities?

Our inaction mainly stems from fear, and it is perfectly understandable.

And totally reversible.

And it absolutely should be.

Studies have shown that people with IDD both want romantic connection as much as neurotypical
people do, and can greatly benefit from having one. Research has shown that intimate relationships
improve mental health and well-being in people with intellectual disabilities, as do friendships, social
networks, and social support. Relationships enhance self-esteem and induce feelings of trust and
security, and people with disabilities often think of commitment and marriage as ways to acquire a
“normal” identity. Most important, people are people, and people want love. We simply want love.

But, still, so many parents, caregivers, and staff set strict boundaries and prohibitions when managing
their loved one’s prospective romantic life. We set limits on time spent together, deny privacy, and
remain hesitant to provide transportation, all in the name of keeping them safe. That is why these
individuals are so often isolated and lonely, rendered unable to pursue connection by geography and
occasion. Or else they do find opportunity, but with a limited pool of romantic prospects and with low
quality alone time with these new partners. In our eagerness to protect them, we may leave them
disappointed at best, or despairing at worst.

So how do we reconcile our reluctance with our rationality (seriously, even Nurse figured out that Juliet
had to spread-eth her wings and fly!)?

The answer is fairly simple: we arm our loved ones with education, support… and more education.

Teach Them About Relationships in General
Before we enter into a romantic relationship, we have to understand what a relationship is and what it
isn’t. Family is different from significant others; doctors and residential housing staff may see us without
our clothes on, but it doesn’t mean they are our life partners. There are different kinds of relationships,
and it is important to recognize each for what it is. Talking to our loved ones about what is appropriate
behavior with others – and what appropriate means in the first place – and depending on the nature of
the affiliation - is the first step in making sure they do not unwittingly commit an act of sexual violence against someone else… and that no one commits it against them. Romeo and Juliet getting lost in love:
appropriate. Friar Laurence and one of them: not so much. 

Teach Them About Public and Private
Showing affection is wonderful. Showing affection in a football stadium can be a felony. We need to
educate our loved ones with IDD that there is a time and a place for everything, and that they should
refrain from showing certain body parts and performing certain activities where they can be seen by
others. The more they hear this information, the better they can refrain from the behavior, and the
safer the community as a whole can be. To wit: even Romeo had the good sense to keep things PG-13
when wooing his boo (Lord Capulet might have bust a gut if they spent an intimate night on that very
public balcony!).

Teach Them About Decision-Making
Here’s where our star-crossed lovers could have really used us. Because even though they managed to
get things right in the cases of appropriate relationships and public/private, they really tanked under
love’s heavy burden in the decision-making department. Because Romeo and Juliet did not machinate
their actions – at least not in any thoughtful nor meaningful way. The Arc of NJ would have taught them
that there are three things to consider before opting in to an activity: our values, our boundaries, and
the possible consequences. Because when we take the time to think about what matters to us, honor
what we do not want done to us, and ruminate on what could happen to us if we choose to do
something, we are much better able to decide whether or not it is the right decision for us. Had the
Elizabethan twosome reflected on just the potential consequences of their actions, I’m sure they would
have taken a raincheck on that poison prank and made lunch plans for the weekend, instead.

Teach Them About Consent
And then repeat the lesson.
And then repeat the lesson again.
And then commit that lesson to memory.
And then repeat it again.
Because there is no more important concept than consent to teach – and learn – and practice and live.

• BOTH people have to want to do something if it is to be done.
• BOTH must be very clear – with words or body language – that they are saying a very enthusiastic YES. (No shrugging, silence, or “gee, I guess so” allowed.)
•  BOTH must understand exactly what it is they’ll be doing.
• BOTH must be awake and alert, completely conscious, with their faculties intact.
• EITHER can take away their consent at any time – before, during, or after the first 1000 time they've done it. The YES can ALWAYS become a NO. And the activity must STOP.

But there’s more…

• No one should touch us without our making it VERY CLEAR that we are saying YES.
• We should touch no one else without their having made it VERY CLEAR that they are saying YES.
• No one should show us their private parts (the ones their bathing suits cover) without our making it VERY CLEAR that we are saying YES.
• We should not show anyone our private parts without their making it VERY CLEAR that they are saying YES.
• No one should send anyone else nude or sexual pictures or videos without a VERY CLEAR YES.
• (And never, ever, EVER send nudes of yourself or request them from others. It is a terrible, dangerous idea to record yourself in any state of undress, and a crime to solicit them from someone else.)

The concept of consent doesn’t just apply to sex. It concerns holding hands, seeing a movie, taking a
walk. It relates to letting someone borrow your pencil or rumple your doublet (we know what you were
up to, Juliet). Consent is about demanding respect for our things, our bodies, our wishes, and showing
regard for those of other people. Thus, we must ask others before we take liberties, and they must ask
us, too; there must be a VERY CLEAR YES before it is done, and that “yes” has a million-day return policy.
Or more.
That’s consent.
So sayeth the Queen. 

Teach Them About Sex
And not just the mechanics of sex (...but, yes, also the mechanics of sex!). Because we need to educate
our loved ones about how to remain safe from sexually transmitted infection, pregnancy, and sexual
violence. Studies have proven time and time again that learning about these topics does not, in fact,
make people hasten to their chambers to give it the proverbial “go,” but actually leads to students to
wait longer to have sex, use birth control more frequently and properly, have better communication
with their partners, and engage in sex less often. Education does that: it teaches us how to do things
smarter.

We know that everyone has romantic and sexual needs to some extent. Ignoring that fact will not make
them go away, but will only inspire our loved ones to either suppress these desires (often resulting in
loneliness and mental health issues such as depression) or figure it all out on the fly (which has
historically not served the participants well).

Outcomes are often much more successful when people are taught what is appropriate and
inappropriate, how to stay safe and healthy, how to avoid unintentional criminal acts (there is a long list
of registered sex offenders with IDD who never knew what they were doing was wrong), and – perhaps
more important – that they have people they can talk to about anything, at any time, without judgment
and without repercussion.

Be that person for your loved one. For, iIf the Capulets and Montagues had chosen that tack, their lives
may have felt more like a Midsummer Night’s Dream than just another tragedy.

Jennifer Harrison

Those who work with, care for, or administer to someone with an intellectual or developmental
disability are woefully familiar with the numbers: people with IDD are sexually assaulted seven times
more frequently than neurotypical people; roughly 80% of women and 30% of men with developmental
disabilities have been sexually assaulted in their lifetime; people with IDD often experience multiple
victimizations throughout their lives. We tick off the statistics like some morbid laundry list, shaking our
heads and promising ourselves to go over Stranger Danger Regulations and Safety Rules for
Relationships just one more time, lest we lapse into complacency and leave our loved one at risk of
victimization.

And that is a potent plan of action! Equipping them with information, empowering them with education,
and sticking the Sword of Scholarship (you know, if that were a real thing…) into their collective fist is
the best way to prevent their falling prey to predators. Keep talking, people; keep teaching! It is still our
strongest defense.

However, even the best-laid plans are sometimes left to languish, and adversity can happen despite our
efforts. For all of our heed, the scariest scenarios can – and do – still occur. And once in a while, it is our
loved one with IDD who doesn’t experience sexual violence, but commits it. What do we do when the
person for whom we are responsible commits an act of sexual violence?
We rally.
Take a deep breath and rally.
Take a deep breath, assemble a team of advocates, pinpoint our supports, and rally. Then we fight the
good fight. It is scary, but we have to stand strong beside the accused while appealing for discipline
befitting their needs and abilities. According to a report by NPR, of 500 cases of suspected abuse of
people with IDD in 2016, 42% were committed by people with intellectual disabilities themselves. It
happens - a lot, and within really good families. Whether pathology, deviance, or lack of understanding,
criminal sexual activity must be addressed. However, not all penalties are appropriate to everyone.
Enter The Arc of NJ’s Criminal Justice Advocacy Program (CJAP), a free resource that is accessible and
indispensable to anyone requiring help in navigating the criminal legal system for individuals with IDD.
With a team of case managers under the leadership of Director Robyn Holt, CJAP’s main intent is to keep
the accused person cognizant, and to explore alternatives to incarceration whenever possible.

Where Do I Begin?
If your loved one does become justice-involved, getting in touch with the CJAP team is your first line of
defense (call 732.246.2525 or go to www.cjapnj.org.) Once they establish that the accused is a New
Jersey resident over the age of 21 years, is currently receiving services from the NJ Division of
Developmental Disabilities, and has an active criminal charge, you will fill out an intake form via e-
signature. CJAP will then request records pertaining to IDD (including evaluations, assessments,
IEPS/ISP) and any pertinent court documents (including complaints, summons, and warrants). Equipping
the team with maximum information will only help in the long run.

Preparation for Court
Before appearing in court, CJAP will provide necessary knowledge on the proper way to present oneself
- including dress and demeanor - before a judge. They will work with you to affirm that you thoroughly
understand the court process and personnel. The team will also dispense educational information,
resources, and distinct characteristics attending specific disabilities. This way, they guard against
misunderstanding about or ignorance of your loved one’s circumstances, and safeguard their rights.

The Personalized Justice Plan (PJP)
Depending on the level of the offense, prosecutors may consider prison or jail time. In such cases, your
CJAP case manager will create a justice plan in tandem with the individual’s attorney and support
system. This document will include an explanation of all relevant lifestyle aspects that can be improved
upon, such as seeking employment, attaining or altering housing arrangements, or entering into a
mental health program. The PJP is designed to leverage any adjustments that might mitigate the
sentencing. “We want to prove that with the right supports and changes, the person could maintain and
remain in the community without needing to be incarcerated, “ says Holt. “ We want to show that with
these modifications and additional assistance, the individual would be less likely to engage in further
criminal activity moving forward.”
Collaborating with both clients and their support system - including family and legal professionals - CJAP
explains and emphasizes the individual’s diagnosis, symptoms, and the potential repercussions they may
have on behavior. In doing so, the attorney will become more familiar with the disability - something of
which they may not necessarily have knowledge - and the court professionals can gain greater insight
into the reasons for the defendant’s behavior. Intent is important, so a judiciary response may be more
lenient if a person acted out of incomprehension instead of malice.

Addressing Communication Issues
The business of the criminal legal system does not always feel like justice, particularly when they leave
fear and confusion in their wake. CJAP representatives commonly accompany their clients to court in
order to ensure that all parties understand the proceedings, their rights, and next steps. Legal jargon can
leave a layman lost if they are not familiar with certain terms (“who is Miranda and why do I want to
hear about her rights??) or simply get disoriented by the speed with which the process often flows.
Conversely, CJAP provides another voice for the individual with IDD to preclude lack of or
miscommunication to the court professionals.

Accommodations
“Case managers also play a crucial role in coordinating and securing appropriate accommodations
tailored to each individual’s specific needs,” explains Holt. When required, this may involve “advocating
for the client to be prioritized on the docket, arranging a separate room due to sensory issues, or
ensuring all involved parties are informed about the client’s disability for better collaboration.” It is
CJAP’s aggregate understanding of both the legal system and the particulars of various intellectual and
developmental disabilities that allows them to help families maneuver through the process of defense
with as much confidence as possible.

In a perfect world, a program such as this would be unnecessary. But it is reassuring to know that - when
our efforts and best intentions succumb to the challenging situations we invariably face - there are
advocates available to assist.

Jennifer Harrison

Let’s travel back…
The year is 2017. A total solar eclipse has crept across the United States. “Coronavirus” may as well have
been a beer with a head cold. And New Jersey then-Governor Chris Christie, bedecked in Spandex hot
pants, sat on a flimsy folding chair on a beach forbidden to the public by a government shutdown. The
world went wild. Photos of the governor morphed into memes, flooding the ‘netwaves and inspiring
ridicule. People superimposed the holidaying politician onto shots of a kitty litter box, coasting on a
Mardi Gras float, in bed beside John and Yoko. The flip-flopped laughing stock could be seen riding a
gnarly wave, commanding the Starship Enterprise, or gracing Gilligan’s Island with any given swipe or
click. His transgression may have been a random gaffe, but the former leader of the Garden State has
nonetheless become infamous, the perennial poster child with zinc on its nose, warning: Be careful what
you do, as the internet is forever.

Why rehash this darkest of times for the disgraced delegate now?

Well, first, the memes are really funny. Seriously. Check them out.

But, second – and more important – it helps motivate us to maintain a watchful eye over what our loved
ones with IDD know not to post (nor allow to be posted about them) on the world wide web.

The permanence of online content is both a blessing and a curse. While it means never again misplacing
our favorite photos or factoids (hooray! Grandma’s noodle kugel recipe forever accessible!), it also
indicates that a single ill-advised upload can mark the difference between brief embarrassment and
infinite indignity. Like a scar, anyone can find it just by looking.

So, how to educate our children, family, friends, and clients with IDD on the importance of internet
discretion? It’s as easy as P.P.P.P.P.P.P! (Not the strongest acronym, but I’ll explain…)

Personal
Two of the most essential lessons for safety are the concepts of “public” and “private” - what is
appropriate to show to the world and what is not. And when it comes to this internet rule, the P stands
for personal information.

We should never, ever let anyone we meet on the internet know the town we live in, the street we live
on, the number of our house, which window is our bedroom’s. We should never post a picture of
ourselves at an identifiable park, in front of our apartment building, in our team jersey, or while away at
vacation (let’s not advertise when our home is currently empty and unguarded!). If someone asks where
we live, keep it general (“a suburb of Trenton!” “Near the beach!”), and if they press for specifics,
change the subject or cut off the conversation. So, because we don’t know who is looking for us online
or why, we want to make sure that our location, our bank or credit card information, pin numbers and
passwords, travel plans, and even our phone number be kept private (that indispensable word again!),
neither written nor photographically captured. If anyone asks, we tell them our name is Mud. (Unless
our name really is Mud, in which case tell them our name is something else!)

Don’t know if a certain piece of information is personal? Err on the side of caution and tell too little
rather than too much. We’ll not only stay safe, we’ll appear deliciously mysterious. A win-win!

Polite
When it comes to being a good citizen even on social media, a great acronym (not as great as ours, of
course, but admittedly impressive) to remember is T.H.I.N.K. So, before you post anything, ask yourself:
Is it True? (No “fake news” here, folks)
Is it Helpful? (If it doesn’t add value to people’s lives, leave it in your diary!)
Is it Inspiring? (Make people feel good, not bring them down)
Is it Necessary? (Like, did we all really need to know this?)
Is it Kind? (If you don’t have something nice to say, zip your lips!)
T.H.I.N.K.ing before posting can help us avoid offending others, getting in trouble, and winding up home
alone with a Cherry Coke on prom night!
We also want to avoid harassing others when we are excited about pursuing a friendship with them. To
make sure you are not making someone else feel pressured to talk or spend time with you, follow the
3x3 rule: if the person has not responded to you after 3 attempts to contact them in one day by
texting/calling/messaging, do not send another message that day. You may try again the following day
but you may only do this for 3 days. (There is hard to get, and then there is impossible to reach!) After
this, you may not attempt to contact the person again.

Pals
The internet is a great place for meeting new people, be it for a fledgling flirtation or a pickleball
partner. Chat rooms, gaming, dating sites, and social media all provide the opportunity to connect with
others we may never have otherwise met. But just because their profile pic is to. die. for., doesn’t mean
that’s the face of the person with whom you are chatting. No matter how intensely or consistently we
communicate, no one ever really knows who they are talking to online. Sitting alone at a keyboard, it is
easy to pretend to be just about anyone else.

So, proceed with caution if your Snapchat compadre invites you over for a mocha-cappu-spresso-latte in
the reading room of their penthouse pad. Because their entire persona could be a perfect pretense.
(Excuse me while I replace the P key on my laptop…)

If you do want to meet an online acquaintance in person, though, there are ways to safely do so. Meet
in public at a coffee shop or diner where there is sure to be plenty of other people around. Take
separate transportation – never get in a car with them or let them know where you live – and
rendezvous at the meeting location. It is also a good idea to bring someone else along; they can sit at
the table with the both of you (and fill any awkward silences that may bubble up – bonus!) or take a
nearby seat where they can keep an eye on you. And remember: keep personal information personal.
Just because you split a pastry doesn’t mean they are worthy of your trust. Give it time for people to
show you who they are.

Papa
How can we tell if what we want to post is inappropriate? If our comments are too provocative? If our
bikini in the picture is a little too… little? A good rule to follow is the Would-I-Show-it-to-Grandpa Rule.
Before posting anything (and T.H.I.N.K.ing about it first, of course), consider if you would feel ok having
your grandfather see it. If the answer is “no,” don’t post! Because, chances are, if your grandfather
wouldn’t approve, it’s probably not meant for the general public, either.

To make extra-certain that no one ever posts a picture of us that would make our Grandpa (or anyone’s
grandpa, for that matter) blush, don’t take racy pictures in the first place! Never capture, share, or allow
someone else to capture or share photos of you in any state of undress or nudity, even if you really,
really, really trust that person. If the pictures don’t exist in the first place, it’s a lot harder to post them!
(And keeping your body hidden by your clothes helps add to that mystery of which we are growing so
fond…)

Persecution
Life might be like a box of chocolates, but can also be a whole lot like middle school, bullies and all. And
the internet can be a breeding ground for nastiness and harassment (remember, that person sitting at
their keyboard is great at hiding who they really are!). As long as you T.H.I.N.K. before you post, you can
probably avoid becoming an accidental online bully. If you do happen to post something that upsets
someone else (let’s say an unflattering picture or a joke that’s more unnerving than entertaining), take it
down if the subject asks you to, and be sure to apologize! The difference between an honest mistake
and bullying is INTENT (meaning to upset someone). If you aren’t aiming to be mean and will do what it
takes to make things right, you can never be a bully.

If you ever find yourself on the receiving end of the harassment - people are making cruel comments,
using profanity, sending threats to one's safety, sharing nude or inappropriate photos, threatening to
share nude or inappropriate photos, spreading rumors, impersonating someone else, or engaging in
cruel or hurtful behavior in groups online - the person disseminating these attacks can be considered a
cyberbully. What happens if we find ourselves the target of this kind of person?

1. If someone has posted something of us that we do not want online, ask them to take it down. If
they did not have bad intent, they will apologize and remove the post immediately.
2. If they do not take it down, make sure to take screenshots of the post! Sometimes, people will
suddenly remove what they have done if they figure out that they will get in trouble (and then
deny ever posting anything bad in the first place). Taking photos and keeping a list of when and
what they have done can be used as proof.
3. Always tell a trusted adult when we think we are being cyberbullied.
4. If someone posts something mean, embarrassing, or threatening about us, we should block
them right away.
5. Report any cyberbullying to the site or platform.
6. In the case of threats to our health or safety, we should report it to the police. New Jersey has
laws against cyberbullying!
7. There are also laws against "harassment, intimidation, or bullying that is reasonably perceived
as being motivated either by any actual or perceived characteristic" such as a disability. If the
mean or embarrassing posts are about our disability, race, or sexual orientation, we should
report them to our school district (if we are a student) or to the U.S. Department of Justice
Civil Rights Division (https://civilrights.justice.gov/#three).

Predators
Let’s now take another journey back through the years, this time to 1950 and a little film called “All
About Eve.” It features Bette Davis as stage legend Margo Channing and Anne Baxter’s “meek” and
“innocent” (note the quotes, folks – this woman isn’t who she pretends to be) Eve Harrington, who
insinuates herself into Margo’s world and eventually takes over her life. You know, Hollywood. Well, the
internet is not totally unlike this film. Not totally.

The truth is, there are people who will feign selflessness and affection and loyalty in order to prey on
our trust. This is why we call them “cyber predators.” Once we let our guard down and begin to share
our problems, our secrets, and our (eh-hem) personal information, these people will take advantage,
whether emotionally, financially, sexually, or in other sinister ways. And because we never know who it
is we are really talking to online, sussing out the cyber predators can be very difficult.

The best way to avoid this situation is to revisit some of our previous P’s: Personal, Pals, and Papa. Keep
private information private, never meet someone in person whom you initially met virtually (unless you
are in public and have an ally with you!), don’t tell secrets you wouldn’t want anyone and everyone to
know, and keep inappropriate photos and topics to yourself. Predators are great manipulators, and will
make you feel like they are the most trustworthy people in the world. But, like Eve Harrington,
sometimes there is more than meets the eye (or chat… or post… or font).

Privacy
Our final P is the most practical one (does that make “practical” the final P?). To stay Internet Safe, pay
attention to privacy settings! (Those are ways to make sure that only the people we want to see our
social media content can see our content!) Here is a quick tutorial:

       Making Facebook private:

1. Open Facebook on your computer, laptop, tablet, or phone.
2. Open the Account Settings, then follow the path Settings & Privacy > Settings > Privacy.
3. Under Your Activity, find Who Can See Your Future Posts, and select Edit.
4. Set it to Friends or Only me.
5. Next select Profile and Tagging from the panel on the left side of your screen. Here you can control who posts messages to your timeline, and who can see what you and other users post on your timeline.
6. Then move on to the Blocking section from the panel on the left. Here you can completely deny access to your profile for certain users by putting them into the Block users list. Alternatively, you can put them into the Restricted list and restrict their access and allow them to only see the public posts and public information on your profile.
7. When you’re finished tweaking your privacy settings on Facebook, go back to the Profile and Tagging section. Scroll down and select View as to see what your profile looks like to other users who aren’t on your Facebook friends list.

      Making Instagram private:

1. Open Instagram and go to your profile page.
2. Select the three horizontal lines in the upper-right corner of the screen to open the Menu.
3. Select Settings.
4. From the Settings menu, select Privacy.
5. Under Account privacy, toggle the Private account switch on.

      Making Snapchat private:

1. Open Snapchat and navigate to your profile page.
2. Select the icon in the upper-right corner of the screen to open your account settings.
3. Scroll down until you see the Manage Who Can section.
4. Select Manage Who Can Contact Me and set it to My Friends instead of Everyone.
5. Then go back, select Manage Who Can View My Story, and set it to Friends Only or Custom if you want to handpick who’s allowed to see your Snapchat Stories.

Finally… enjoy! When you’ve taken all the necessary steps to stay safe in Cyberworld, you can explore the web without worry. And if you see Bernie Sanders and his viral knitted mittens, hell him I say “hi.” 

(For more information about Internet Safety, go to Lesson 9 in the Home Sexuality Education Curriculum!)

Jennifer Harrison

Time may have buzzed by, but the sting still remains.

I was a teenager raging through northern New Jersey, my mean streets manifesting in the form of a mall. Madonna’s rubber bracelets were the height of refinement. My hair was huge, and so were my dreams. Can you smell it? That’s Love’s Baby Soft, my friend. Breathe it in, the scent of Teen Dispirit.

It was 1984 and I had set my newly pubescent sights on Tommy I-Won’t-Mention-Your-Last-Name-But- You-Know-Who-You-Are, a lanky but loveable boy who sat near me in woodshop, his Jordache jeans creasing against the cold, steel stool. That year, he broke my birdhouse and stole my heart. Sometime mid-autumn, I mustered my courage and approached him (he looked even more like the lead singer of the J. Giles band up close! But I digress…). I made some small talk, popped my gum, then broached the approaching Sadie Hawkins ball, that insufferable annual event that urged girls to secure their own escorts for an evening of skinny ties and awkward small talk. I asked if he maybe, um, wanted to join me.

(Silence.)

…to the dance.

(Crickets.)

…as my date.

(I saw his eyes roll. Right. Back. Into. His. Head.)

Fin.

Forty years, two kids, and what feels like a lifetime of lessons later, I still wince when I think of Tommy, who never spoke to me again. But I look back with neither anger nor regret, just compassion for that young girl who limped out on a limb, not quite primed for the impending rejection. 

Nobody enjoys a “no.” We like it less when it’s provided by a 95-pound playboy who inspires stars in our eyes. But, despite the lurch that occurs in our stomachs when the object of our adoration delivers a thumbs down, we are nonetheless expected to react with, if not grace, then something at least akin to acquiescence. How do we learn to swallow our horror and put on a brave face? And how do we instill this skill in the individuals we love with IDD?

The answer is in the question: it is, indeed, a skill and, therefore, requires practice. That’s how we learn. One bitter, biting, hideous insult at a time.

Luckily, there exist a few rules that can help us a) digest our disappointment a bit more easily, and b) feign equanimity until we make it back home to our stockpile of Fudge Stripes and sad songs. 

So, when someone turns you down…

Stay Cool

If we liked them enough to ask them out, then we should like them enough to forgive them when they don’t reciprocate our romantic aspirations. It is important to remain kind when someone rejects us (even though our impulse may be to try to crush their dreams, ambitions, or iPhone). Let’s face it, declining a date isn’t a crime - it’s not even something someone often delivers with malice - it just means that the person does not share our same desires. And we all have the right to pursue what we want and avert what we don’t. So, when we are dealt a “no,” make sure to stay serene, refrain from saying mean things to them or about them behind their back, don’t yell or cry, and stay calm. 

And don’t blame them for the bad feelings we might be experiencing due to their disinterest. Chances are, it was difficult for them to turn us down, too. As Otis Redding sang, “Try a little tenderness!” (He may have been sitting on the dock of the bay when he declared that…) 

Radical Acceptance

One difficult yet invaluable talent everyone should learn to nurture is radical acceptance. According to Psychology Today contributor Michelle P. Maidenberg, PhD., this is the process of “accepting what is not under our control and embracing what is happening now.” In short, you may not like it, but you gotta face it. If someone declines your invitation or prefers not to partner up with you, acknowledge to yourself what they are feeling and that they have the right to feel it. Easy? No way. But emotionally better for you both? Absolutely.

Radical acceptance also means only asking them for the date or relationship once. One time. Uno. If they turn you down, you have to (radically) accept it. You can let them know you are ok by saying “I understand” or “fair enough,” but do not ask them again or harass them, try to convince them, make them feel guilty, or try to find a way to transform their “no” into a “let’s go!” When we are turned down, we are allowed to feel bad (we’re human, after all!), but we must cross that particular wish off our list and move on to the next thing, whether that means learning to kickbox or “kicking it” with someone else! That old saying about the sea being full o’ fish is a true one!

Practice Self-Compassion

Broken hearts hurt, no matter who held the hammer. And it’s ok to feel sad, want to wallow, and take time to lick our wounds (country singers count on it!). 

But what we should never (and never need to!) do is blame ourselves. Rejection is often not about us; the person we asked may already be in a relationship or may be getting over one, they may be pining for someone else, they may not be interested in dating a person of our gender or dating anyone at all, they may be very busy, they may be very tired, they may have a litter of kittens to tend to and don’t have time to frolic with new friends! There are a million reasons why it’s not about us, so we have to apply the tenderness (remember Otis Redding’s wisdom?) to ourselves. Here’s how:

Be proud of having tried! It takes guts to profess your feelings.

Remind yourself of your great qualities. We are all loveable in our unique ways - remember yours!

Realize that bad feelings don’t last forever. You will get over this. You will feel better. And there will always, always be someone else who comes along - in an hour or a week or a month’s time - who makes us want to “put ourselves out there” again!

Reach out to friends and family to vent about how you’re doing… and here is where you can really let it out. When you are with the people who matter most to you, you can release all of your feelings. Let ‘er rip; ugly cry!  After all, while it is inappropriate to emotionally explode in front of the person who rejected us, it feels FABULOUS to let it out amongst “our people.” So grab the Kleenex and fire up the Shania! (Yeah, that rejection don’t impress me much!)

When you have to turn someone else down…

Remember how we mentioned that doing the rejecting can sometimes feel as hard as being rejected? It’s true! It requires looking into the other person’s expectant eyes and asserting ourselves, risking disappointing them, maybe making them feel bad, and likely sucking the wind out of their romantic sails for a while. 

However, we all have something called BOUNDARIES (never heard of boundaries??!? Check out Lesson 2 in our Personal Safety Curriculum, coming to TheArcSVPP.org on June 1, 2024!). Our boundaries help us make sure that we do not do what we truly do not want to do, and that others don’t do to us what we don’t want done. So saying “no” to someone is necessary when we simply don’t want to do something. Everyone has the right to say “no.” Even you. But there are ways to deliver the bad news while minimizing the pain we provoke (and we can only hope our rejectors embrace these pointers themselves!).

Keep it Classy, Kid

If you’ve ever been rejected, you understand the sadness it can inspire. So be kind when you have to deliver the “no” to someone else. Make sure never to laugh at them for asking, and refrain from telling others about declining the date. Don’t talk about whom you would rather hang out with, or the great date you had last Saturday. You are dealing with a human being just like yourself, and you want to consider their feelings, too. Be gentle.

Hold the Waffles

In order to spare their feelings when rebuffing someone, we may find ourselves elaborating, apologizing, or, well, waffling. But this is helpful neither to you nor to them! Over-explaining or acting like your mind might change at another juncture will only encourage them to hold out hope when your “no” actually meant no. (And “no” always means no!) So when you demur, keep it simple (“I have to say ‘no,’ but thank you for asking!”), be clear and direct (no “I don’t know” or “well… let me think about it” or “uh, this weekend doesn’t work.” They should understand that you are declining and that your answer will not change. Period.), and treat them the way you would want to be treated. You can even say something nice about them (“you are so funny and nice, but I don’t want to be more than friends”). Just make sure nothing you say gives them false hope.

Stiffen That Upper Lip

Finally, take care of yourself! Again, rejection is hard on both parties, so don’t feel guilty or berate yourself if they seem crushed. It’s normal. It’s part of life. And they will get over it.  But your first responsibility is to you, and that means honoring your BOUNDARIES (is that word getting more familiar?), even if it means letting someone else down in the process. So recognize that they may have hurt feelings and may not even want to talk to you for awhile, but that, ultimately, you did the right thing and in the right-est (it could be a word!) way.

When Tommy tossed me aside like a stripped slip of sandpaper, I was, in the day’s vernacular, “totally buggin’.” Not only had he managed to annihilate my pipe dream (I spent Sadie Hawkins home with my sister and Saved By the Bell), but he made me chase that bitter pill with a dose of derision, as well. The grimace, the chuckle; they both beat in my brain for a long time after. Had he not been taught to keep it classy? Did he not want to help ease my grief, even briefly??? No, no he didn’t.

However, despite the emotional wreckage he wrought, there’s an upbeat addendum to this Singular Unfortunate Event, for the experience was unpleasant, but the aftermath of its aftermath was ideal. Because, rest assured, I slowly got over that kid and by spring was holding hands down the hallway with Anthony I-Won’t-Mention-Your-Last-Name-But-Only-Because-I-Can’t-Remember-It. And after Anthony, there was another. All the way up to my husband, who is better than Tommy ever was.

We always grow to love again. Even if we think we won’t. And one day our “yes” will align with another person’s “yes,” maybe even for a lifetime. With that, we leave behind the “no”s we thought would forever level us. Ain’t life grand that way?

Jennifer Harrison
My sister used to belong to a country club. Not a lock-jawed, ascot-sporting kind of club, but one that had a decent snack bar and only slightly too-cold pool. It was a nice place to take her kids on warm summer days when their woodsy upstate homestead got too humid. (Even vegans hate to frizz...)

She invited me to bring my daughters along one afternoon, so we packed our towels and piled into the car, hopes high and gas tank filled. Like an itinerant word problem, we drove a loud 1 ½ hours with the Spongebob soundtrack blaring at a 10 for 74 miles to the agrestic destination, our bathing suit ties cutting into the backs of our sweaty necks. When we finally arrived, we were greeted with popsicles and a good number of hugs. 

We spent the first part of that day playing in the poolside shade. My girls had fun. My niece and nephew had fun. My sister had kombucha and I had a reckoning with the New York Times crossword puzzle. The day was - pun intended - going swimmingly. 
And then the bee showed up.

It wasn’t so much its appearance that incited what happened next - although its buoyant body didn’t exactly inspire serenity - as the fact that it eventually deposited itself on my older daughter’s arm. Of all the arms it could have chosen within our family collective, this arm was among the worst. For my big little girl was no lover of bugs nor bloodsuckers, and definitely no grinner-and-bear-it. She was a screamer, and a generous one, at that.

So, the shrieking and flailing began. And the stinging commenced. And the resulting freak-out was breathtaking. She single-handedly shattered the sound barrier and several eardrums without missing a beat. I’ve heard Bear Mountain has never been the same.
On the trek home (not coincidentally just a few minutes later, upon the unspoken request of some beetle-browed sunbathers), we drove in silence, but for the random whimper or hiccup from a small voice in the backseat. A Ziploc baggie leaked its ice like tears, soaking her booster seat, and I wondered how the whole situation could have been avoided, or at least made a little easier.
Of course, we can’t ever anticipate an insect attack, but there are scary situations that we can manipulate to become a bit calmer and more tolerable to our loved ones. Among these events is the trip to the doctor’s office. Especially when it involves people with intellectual or developmental disabilities (IDD) and sick- or well-visits that involve the examination of their private parts. And while this type of visit will invariably arouse anxiety, there are ways to quell the drama. It just takes a bit of teamwork.
But first, some context.

Despite the fact that there are 7.4 million Americans with IDD, doctors are not only rarely trained to accommodate the specific needs of people with disabilities, but they often graduate from medical school having had no exposure to these individuals, often resulting in discomfort both for the healthcare provider and patient. A 2022 survey of 714 Massachusetts physicians revealed that only 40% felt confident in treating people with IDD, while another survey reported that 77% of physicians perceived a poor or merely fair ability to provide care for people with Autism Spectrum Disorder. However, advises Brendan Murphy of the American Medical Association, “when working with patients with intellectual or developmental disabilities, it’s key to remember that patients themselves are the most important and involved stakeholders in their own treatment.” And so we - and our medical teams - must listen.

Here’s how:

Speak For Themself!

According to Dr. Priya Chandan, Assistant Professor of Neurosurgery at University of Louisville School of Medicine, patients are a doctor’s “most valuable source of information.” Even when a person is non-verbal, they still have much to communicate about their health and needs. Because of this, doctors should not only interview the patient’s accompanying adult, but make sure that the patient themself is given the opportunity to explain - however they communicate - their health status. As the caregiver, it is also important to ensure that doctors use simple, easy-to-understand language when speaking with your loved one with a disability and then take the time to verify that this information was understood. Let’s face it, hearing that we have ephelides is terrifying; being told we have freckles is not!

Seeing is Believing
For patients who respond better to visual supports, consider a First-Then Board, which provides graphics that illustrate task expectation and what will follow. When used for a doctor’s visit, the “first” will explain a procedure that the person with IDD will most likely not enjoy - such as contact with frightening-looking or cold instruments - while the “then” section will illustrate desired items or experiences that will be available afterward (think something sweet or a quick trip to the park). When expectations are made clear and rewards are presented, getting through the tougher parts of an exam is a little bit easier. (You can learn more about First-Then Boards by copying and pasting https://www.autism.net/resources/visual-gallery_/t23054/s23699-first-then-board or https://autismclassroomresources.com/visual-schedule-series-first-then/.)
Visual supports are also very helpful when it comes to the tricky topic of reproductive and sexual health education (including information about contraception and their uses). The Journal of Family and Reproductive Health recommends “using evidence based strategies involving use of pictures, animations, and models by adequately trained healthcare providers including midwives.” (You can find resources for visual supports by copying and pasting https://asdsexed.org/category/resources/visual-supports/.)

Play Doctor
While in a perfect world we’d be able to spend as much time as we need and with the perfect class of care by our medical professionals, this is all too often not the case in reality. So, if you find your doctor’s approach is not appropriate to your loved one’s needs, here are some ways to take the proverbial stethoscope into your own hands.

• Contact your medical professional before a visit and ask for accommodations that will help make your time there more comfortable. Discuss communication issues, past experiences that were successful, available supports, and the patient’s strengths and interests. Also include information about stimuli that can make your patient upset or any sensory differences. Establishing a connection while developing a foundation of trust is key to getting adequate medical care.
• Think of conducting a mock visit before the actual appointment. Taking the time to review pictures of the doctor and/or the office, medical instruments, and even simulating procedures such as having blood pressure taken or tapping their knee to check reflexes can make the real experience feel less awkward.
• Along the same lines (and depending on sensory vulnerabilities), expose your loved one beforehand to items that may incite a strong reaction, such as the smell of rubbing alcohol, the taste of a tongue depressor, or the feel of paper on the exam table.
• If busy waiting rooms are a concern, ask the front desk if it is possible to wait in the actual examination room, where there is less noise and bustle. 
• Find out if there will be multiple blood tests or shots, then ask if one blood draw or a combined shot is possible. The fewer the needles, the calmer the patient! (The same goes with bees…)
• Ask the doctor, practitioner, or nurse if they can lay out all necessary equipment before the patient enters the room, and request that they be stored where your loved one cannot access them. 
• When necessary, make sure that the patient is seated at the farthest distance from the door and that someone is stationed nearby in case your loved one attempts to run out.
• BYO distraction toys and other paraphernalia tailored to your loved one’s needs. You can also devise distraction activities to engage in before a given procedure, like singing silly songs or playing some of their favorite music. These are best utilized before agitation escalates.
• Encourage as much autonomy as possible in a medical setting, such as the color of a bandage, what chair to sit in,  or which arm they’d prefer for pulse-taking. 

Relax (Then Do it!)
“White coat syndrome,” when a person’s blood pressure increases as a result of anxiety due to the appointment itself, accounts for approximately 25–30% of people attending follow-up appointments for high blood pressure. In other words, nerves about trying to get well can make some of us sick!
But there’s a reason you never see a yogi getting hysterical at the sight of an otoscope (seriously, you can’t say you’ve ever seen one); relaxation and deep breathing exercise have been shown to decrease the physical tension and worry that arises around All Things Medical.  To help with pre-visit jitters, consider partaking in some of these techniques:

• Deep breathing: have your patient take a deep breath, hold it for a few seconds, then release.
• Muscle tensing: have your patient focus on tensing then releasing different muscles in the body one at a time.
• Visualization: have your patient imagine something soothing and visualize that scene with their eyes closed. Have them think about the smells, sounds, and feeling of what they are imagining. Think about bringing along pictures to help them conjure up the image.

Minimize Trauma
Undergoing exams that are invasive or involve private parts can be particularly upsetting to people with IDD, particularly if they have prior trauma. The AMA Journal of Ethics explored alternatives to the standard approach, which can retraumatize some patients, and deemed the use of anesthesia acceptable. One study found that individuals with developmental disabilities who were sedated before their gynecological exams and endometrial biopsies enjoyed shorter hospital stays, lower hospital charges, and experienced no complications. They also concluded that it is ethical to perform other procedures that warrant anesthesia at the same time, such as dental work.

Find the Right One
If you are struggling to get accommodations from your healthcare provider, you can find someone for intimate care who specializes in sensory-considerate and accessible healthcare by copying and pasting https://awnnetwork.org/autistic-womens-health-provider-survey-results/. You can also ask your patient’s pediatrician or primary care provider for a recommendation, or ask friends and other autism families in your community.

Taking steps to make healthcare easier, calmer, and more efficient is essential to keeping your loved one healthy… and keeping that bee out of your bonnet!
 

A Big Nose or Burnished Badge: Helping Individuals with IDD Become More Comfortable Around Police

Jennifer Harrison

My mother was an actress when I was small. Save the occasional cameo on a daytime soap and one surprisingly popular bra commercial (oh, my first grade shame!), the bulk of her career was contained to a children’s theatre troupe who performed at sundry establishments across the state.  In “The Invisible Dragon,” she played The Princess. In their thinly-veiled Aladdin knock-off, she was The Genie. In “The Emperor’s Nightingale,” she found herself royalty once again. But their magnum opus, the production to end all productions in my adolescent opinion, was “Hansel and Gretel,” brought to the unwashed masses at the bandshell behind the Paramus library. That one knocked me right out. I remember spending hours watching the cast-cum-crew creating the gingerbread house, a tempting confection of cardboard and poster paint. I recall running around the deck-chair-peppered library lawn in the hours before opening evening, my blankie flying behind me like a sail. But, as I look back, what I remember most is the moment my mother revealed herself in costume to me for the first time as… The Witch.

It was an experience that quite literally changed me.

She was exiting her hair and makeup trailer (also known as our idling station wagon, windows sticky with Aqua Net) when I caught sight of her. She peeled herself off of the passenger’s seat, noticed my approach, and – without missing a beat – abruptly struck the haggiest, orphan-eating-est, most terrifying posture into which she could contort her black-bedecked body, conical cap piercing the darkening sky. My mother was nothing if not committed. A silent moment passed between us before her eyes flicked down at me and she straightened, bemused. I suppose she was waiting for a giggle – or at least for me to resume breathing – but I was frozen in fear. It was the nose. The giant, twisted, mole-infested latex nose that sat in the middle of her suddenly unfamiliar face. I had no idea who this woman was, but the one who read me to bed every night, she was clearly not.

It took an accelerated attempt to snap me out of my stupor (showtime approached!), my mother rocking me and repeating the mantra, “Jen, I’m still Mommy! My face is from Party City!,” and I finally either absorbed her assurances or tired of her recital just before the play began. I sniffed an “I’m ok,” and she hurled herself on stage in time to terrify a significant section of Bergen County’s most astonished spectators and a small mob of mosquitos. Job well done.

After the curtain call, she plucked the aberration from the center of her face and hugged me, asking how it might be less scary for me in the future. My childlike mind immediately raced to, “DON’T EVER DO IT AGAIN, THAT’S HOW!” but my mother gently rebuffed that suggestion. I can now accept that it might not have been the most practical antidote, as well. 

The fact is, whether due to a synthetic schnoz or intimidating accessories like a police person’s badge, fear happens. So, how can we make terrifying things a little less so when it comes to incidents over which we may have no control, especially in serious situations such as interaction with law enforcement? 

Advocacy, services, research, and innovation organization Autism Speaks reported in a 2019 study that 53% of autistic adults recounted having had four or more interactions with police in their lifetime, many characterizing the exchange as negative due to officers’ lack of understanding or awareness of (sometimes hidden) disabilities.  Because of inexperience with people with disabilities, police are prone to misconceive markers of developmental disabilities as recalcitrance; difficulty with personal expression, unresponsiveness, overwhelm, and the impulse to flee may make an officer assume these symptoms are impudence warranting a harsh response. Police are also in danger of unwittingly accepting false confessions due to the subject’s eagerness to please, vulnerability to influence, or desire to hide their disability. According to online law enforcement information source Police1.com, “people with often-invisible disabilities and conditions like autism, deafness, mental, illness, dementia, fetal alcohol syndrome or a range of other conditions may be inhibited in their ability to communicate, follow commands or behave in accordance with social norms, putting them at risk during encounters with law enforcement.”

These circumstances - compiled with a relatable fear of authority - can leave people with IDD even less likely to stay calm in the presence of an officer or to seek one out in times of need. But there are ways to make it easier!

Teach Your Children Well

Acquainting your children with the appearance and responsibilities of police professionals will allow them to grow up with a feeling of security around them. So get ‘em while they’re young! 

Read books featuring police officers to your kids! Stories like “Topsy and Tim Meet the Police,” “I’m Afraid Your Teddy’s in Trouble Today,” and Richard Scarry’s “A Day at the Police Station” will solidify the idea of police in your child’s mind. Picture books are also helpful, both for language-building and communication skills, as well as getting comfy with the idea of law enforcement.

Incorporate badges, hats, and uniforms to their dress-up wardrobe! (Why should doctors and farmers get all the fun?)

Bring home some coloring books about police people, or print out coloring pages for free from iStock (https://www.istockphoto.com/illustrations/police-officer-coloring-page-for-kids) or First-School Preschool Activities and Crafts (https://www.first-school.ws/theme/coloring-pages/community-helpers/police-officer.htm) or 

Bridge Over Troubled Waters

Even if the waters are calm, a bridge is always a good thing. (Remember The Bridges of Madison County? The Bridge to Terabithia? Bridge of Frankenstein? …Wait, that last one was a type-o.) So, work on building a bridge with your local police department early and often. Familiarity breeds comfort, especially when we are acclimating our loved ones with IDD to living among law enforcement. They will come to see their friendly neighborhood police as just that: friendly!

New Jersey is dedicated to strengthening community trust, and has implemented a number of initiatives to that end. In 2018, the Attorney General’s Office instituted the 21 County, 21st Century Community Policing Project, also known as “21/21,” in which community stakeholders and law enforcement leaders convene quarterly to discuss important topics relating to their ongoing relationship. It has also launched the “Officer Resiliency Directive” dedicated to promoting stress management for police, a program which would ensure calmer, more positive community interaction. 

Families can also “adopt a cop,” so to speak, by inviting a member of your local police department to visit your home, block party, or neighborhood gathering. Just becoming more accustomed to a person can make it much easier to be around them. You can also offer to help out with a police event, drop in to meet the police chief (bringing bagels benefits everyone!), and loop in your local police to issues of concern to you and your community. Staying in touch will lessen the distance between you, and make you a team!

You can also highlight the “fun” in “fundamental rights” (see what we did there?) by making your visits entertaining! Become pen pals with a member of your local police, invite an officer to your next birthday party (have them bring their cruiser!), or take a tour of the department with an excited group. The more face time they get, the better they’ll feel.

Most important, not only will your loved one become more comfortable around these professionals, but your local police force will become more familiar with your loved one! That means understanding their regular day-to-day behaviors (which is also good for helping them recognize when something is wrong) as well as getting to know them as the beautiful people they are! (We love a win-win!)

Ardor and Diligence

First lady Abigail Adams once said, “Learning is not attained by chance, it must be sought for with ardor and diligence.” But we say, “Forget the sweat, we’ll come teach you!”

The fact is, no one can identify something if they don’t know what to look for or what they are seeing. So, it is up to us to make sure that our local officers understand who they are serving and how best to do it, even if those citizens do not reveal their cognitive differences! Providing the police with essential information can mean the difference between a negative interaction and an empathetic one.

     Here’s a quick primer:

     Possible behaviors by people with autism, courtesy of Autism Speaks:

Exhibiting an impaired sense of danger

Wandering

Feeling overwhelmed by police

Fearing people in uniform

Reaching for objects out of curiosity, such as shiny badges and handcuffs

Exhibiting fight or flight responses

Not responding to commands such as “stop!” or to provide a name

Delayed speech/language

Avoiding eye contact

Repetitive behavior like rocking

Sensory perception issues

Seizures

     Pathfinders for Autism adds:

Self-soothing behaviors, such as fidgeting with an object in a pocket

Running away

Touching or trying to touch a police officer

Standing too close 

     Also from Autism Speaks, potential signs of meltdown, a common stress response for people:

Withdrawal

Non-speaking

Emotional outbursts, including crying or other atypical behaviors

Communication challenges

     Possible symptoms of Fetal Alcohol Spectrum Disorder (FASD), courtesy of the CDC:

Poor coordination

Hyperactivity Difficulty with attention

Poor memory

Learning disabilities

Speech and language delays

Low IQ

Intellectual disability

Poor reasoning skills

Poor judgment

Vision or hearing difficulties

If a law enforcement officer observes behaviors like these but is still unsure of whether they stem from a cognitive difference, they should approach the person as if they do, indeed, have one. Erring on the side of caution is always preferable. 

An Ounce of Prevention

Although we know that the police are meant to serve and protect, the stark reality is that, well, oversights can still happen. That’s why we want to arm our children and loved ones with as much protection as possible. Here are some easy ways to keep them safe:

FOR YOUR LITTLER LOVED ONES:

Wear it on Their Sleeve

Gift your child with IDD an identification card. These accessories can be personalized with the child’s name, age, address, diagnosis, and medications. Providing these details when approached by the police can mean the difference between an upsetting experience and an enlightening one. (But don’t forget to teach your loved one to alert the officer as to what they are reaching to show them before putting their hand in their pocket!) Medic alert bracelets are also helpful in such situations; they can even be adorned with a QR code that will bring the officer directly to your child’s information on their database.

Book ‘em with Social Stories!

According to the National Autistic Society, social stories are “short descriptions of a particular situation, event or activity, which include specific information about what to expect in that situation and why.” Educating your child about who the police are and what an encounter with them might look like can help ease the anxiety surrounding the event. You can work together to create a social story or pool your resources with other families!

FOR YOUR MORE GROWN UP LOVED ONES:

Tell Hard Truths

Although we know that most law enforcement professionals are dedicated to serving and protecting every citizen, we’ve all heard stories on the news about those who are not as impartial. Once kids are old enough to accept this reality, it may be helpful to educate them about racism, ableism, and the police. Ways to approach this can include arts and crafts or games, which can be easier to understand and less intimidating. The Anti-Defamation League suggests mask-making, self-portraits, and other activities at https://www.adl.org/resources/tools-and-strategies/thinking-about-social-justice-through-crafts-and-conversation.

Later, says website Learnbehavioral.com, you may want to talk about the history of the police force or the effects of bias-based policing such as George Floyd’s killing. It is important to underscore to young adults that most law enforcement professionals are sources of safety to all of us, but to inspire an awareness of potential dangers, as well. Your autism provider or care manager can help navigate these difficult discussions.

Play the Part

Like social stories, role playing can help your child “experience” a police encounter without the fear! Take turns playing the police officer and child with autism, and work through different scenarios. Don’t forget to pay attention to lessons you can teach along the way (“Always show your hands,” “Do not touch them or reach for an officer,” “Do your best to communicate with the officer to let them know that you have a developmental difference or if you do not understand what they are asking you”). 

You can also take advantage of the Center for Autism Research at Children’s Hospital in Philadelphia’s virtual reality training simulations, found at https://floreovr.com/. Request a demo and see how immersive experiences can make learning gentler.

Keep Calm and Carry On

Staying calm is the first step to easy interaction. Some helpful suggestions include:

Deep breathing

Ask for a family member or advocate in an even but clear voice; letting the officer know that your loved one has a disability will help them understand this need

Do not move around too much; keep arms relaxed 

If there is too much noise, feel free to ask the officer, “It is too loud here, can we please move to a quieter spot?” or “The noise hurts my ears, do you have any headphones I can wear?” Informing the officer of an IDD diagnosis is especially helpful in this circumstance.

Cop to it

Many law enforcement officers go above and beyond their everyday obligations. Here’s a way they can continue that practice…

Police should understand that many people with IDD will attempt to self-soothe when confronted. They may also be sensitive to stimuli, so officers should avoid loud noises - including shouting - and sudden movements. Officers should also refrain from making physical contact with a person suspected of having neurodivergence, as it can be extremely stressful for them.

Don’t Just Meet ‘Em, Join ‘Em!

Think the police are just people to view from afar? That’s not how it has to be! People who are neurodivergent can accomplish so much in life, and joining the law enforcement profession is one of those things!

Awareness site Autistic and Unapologetic featured an interview with Ben, a British police officer with Asperger’s, in 2019. Here’s what Ben had to say:

“I developed a personality that wanted to be part of a community and I already had experiences which gave me motivation to do something good. Then very, very quickly I knew that I wanted to be in the cops.

I think it’s important that autistic people are given the chance to be in the cops in the same way that the police should be a mix of all ethnicities, sexualities and religions, because the fabric of the community is just as diverse and we should represent who we are policing. Also, there are many autistic people who will need support. They are victims of crime so why can’t they be soldiers against crime?

“...but then, I suppose it would be unfair for me to turn around and say that every autistic person can be a cop - because I don’t think that’s true. You have to be realistic. Some people who are autistic and regimented and you don’t get that in the cops. In a split second they could say you’re working another [shift] and you are going to really struggle.”

As with all people, not every profession is right for everyone. However, there is a place in the policing profession for every interested and able person (neurodivergent or -typical, it doesn’t matter!). Those for whom policing is not a good fit can explore positions within the police without actually donning a badge, jobs such as dispatcher, file clerk, or interpreter for the hearing impaired. Like any dream, it may require exhausting Plans A, B, and C before arriving at the one that works. But, also like any dream, it’s worth it!

Jennifer Harrison 

One day back in college – when keeping an apartment clean seemed about as important as learning to fly fish – I purchased a zucchini. A sudden and fleeting impulse to do something adult.  I paid for it with my waitressing money and plunked in the refrigerator crisper.

Over the following weeks, I spied that zucchini out of the corner of my eye whenever I reached for a Diet Coke or leftover corner of a sandwich, a blurry green blob below the grease-smudged bottom shelf.   The vegetable became a fixture in the fridge; not something to be sliced or sautéed, but glanced at, grimaced at, and ultimately ignored. 

A month may have passed… maybe two… before the expected scent signaled me.  I slid open the foggy drawer to find my zucchini had somehow both wizened and ballooned at the same time, curling in on itself like a snake eating its own tail when I wasn’t looking. It had become hideous, menacing, whiskered. Making a ratatouille was clearly out of the question at this point, and I knew I had to throw the produce away before it colonized the second floor. 

It was sloppy work and there were tears, but I did it.

So, what does this have to do with sex education? Spores aside, probably more than you think.

The fact is, I dreaded reaching into that crisper, endangering my manicure with its wet entrails. I wished someone would swoop in and do it for me, someone somehow more qualified to slay that dragon. But it was unavoidable. I could not let it go forever - no matter how long I wanted to put it off - because it simply wasn’t healthy to let it fester there, neglected.

Such is the same with teaching our children about sex. We wince, we shudder, we bemoan having to talk about the body parts, the fluids, and the feelings. We don’t want to say those words, our heads hung in shame, our shoulders braced. We don’t want to get our proverbial hands dirty. It would be easier to just ignore the issue and hope it never comes up.

However, like death and taxes, it will come up. It will.

Puberty happens and hormones flow. We can avert our eyes, but it happens with or without our attention.  And if we are not watchful, changes may bring about actions which then cause consequences far greater than a bit of mold on a plastic coffer. Leaving people to figure out sex on their own rarely yields safe, healthy, well-considered choices.

According to the National Survey of Family Growth, pregnancies among women with disabilities are 42% more likely to be unintended than pregnancies among women without disabilities. People with intellectual disabilities are far more likely to acquire sexually transmitted infections than their neurotypical peers. And those with IDD are seven times more likely to experience sexual violence in their lifetimes. Many believe that teaching students about sex will encourage them to have sex, but research shows the opposite. In fact, the World Health Organization acknowledges that “young people are more likely to initiate sexual activity later – and when they do have sex, to practice safer sex – when they are better informed about sexuality, sexual relations and their rights.” Knowledge is power; what they don’t know can hurt them.

It is up to us to ensure that our loved ones with IDD learn about their bodies, what their parts do and how they change, what sex is and what its consequences can be. We have to let our kids know that they can say “no!” to sex and teach them how to say it, and we must instill in them that they and their partner must both give and receive clear, enthusiastic consent before any kind of sexual contact. We must tell them that they can change their mind at any time, no matter what they are already doing or have already done, or how others might react. They need to understand that there are public and private behaviors – and public and private places – and that every behavior belongs in an appropriate place or they risk being punished for a sexual crime. While we might cringe while uttering “penis” and “vagina,” we need to teach our kids the proper words so they can explain to doctors or the police if anybody touches theirs. And our kids need to know exactly who is allowed to have physical contact with them – and how, and where – so they can recognize when it is not allowed.

Ignorance is not bliss, it is dangerous.

I learned many tough lessons that year in college, like the consequences of ignoring parking tickets and how woefully short is the life span of a squash. There will always be hard situations requiring unpleasant responses. But, really, we all get to a point in our lives when we have to roll up our sleeves, don some rubber gloves, and get the messy job done. Our health and the safety of those we love depend on it.