ECHOLALIA AND SCRIPTING: STRADDLING THE BORDER OF FUNCTIONAL LANGUAGE

Have you ever wondered why autistics do scripting and echolalia? Well, here I am today to share with you all about this to gain a better understanding of why this is.

Scripting is the repetition of words, phrases, intonation, or sounds of the speech of others, sometimes taken from movies, but also sometimes taken from other sources such as favorite books or something someone else has said. People with Autism Spectrum Disorders often display scripting in the process of learning to talk.

However, Echolalia definition on the other hand is defined as the repetition of words, phrases, intonation, or sounds of the speech of others. Children and adults with autism often display echolalia in the process of learning to talk. Immediate echolalia is the exact repetition of someone else’s speech, immediately or soon after the child hears it.Delayed echolalia may occur several minutes, hours, days, or even weeks or years after the original speech was heard. Echolalia is sometimes referred to as “movie talk” because the child can remember and repeat chunks of speech like repeating a movie script. Echolalia was once thought to be non-functional, but is now understood to often serve a communicative or regulatory purpose for the child.

Let’s imagine that you’re in an environmental setting with a few friends and yourself as the autistic.
You all are sitting down for dinner at a restaurant or even a group therapy session and yourself as the autistic feel tired and wiped out after having a busy day doing normal activities with your peers.

Example 1: During the course of dinner shall we say, that the waitress that has been serving customers make many visits to your table especially asking questions that they usually do. Questions like:

  • How are you tonight?
  • Would you like me to bring any ketchup or hot sauce?
  • Is there anything else I can get you?
  • Would you like more water?
  • Do you want to see the dessert menu?
  • To every one of those questions (and perhaps others I don’t remember) I replied, “I’m good.”

“I’m good” made sense the first time and is an okay answer for the others, assuming I didn’t actually want more water or a dessert or need anything else.
Except that I did want more water. I was just too tired to override the default script my brain had settled on and by the time I realized what had happened, she had disappeared into the kitchen.

Not a big deal. Someone else came around and filled our water glasses a short time later. If they hadn’t, I could have just told the waitress I’d changed mind
and would like some water.

Functional or Nonfunctional?


So does that make my scripting functional or nonfunctional? This is the question we need to ask ourselves while we are using these formalities of our different language.

“Functional language” generally refers to language pragmatics or the social function of language.
It isn’t so much the opposite of nonfunctional as a way of describing a specific class of language.
More simply, language is functional if it helps complete interactions like:

*inviting
*greeting
*requesting
*demanding
*clarifying
*refusing
*agreeing
*offering
*suggesting
*informing
*giving advice
*apologizing
*complaining

In the context of autism, functional and nonfunctional are also used in the more colloquial sense too.
Something is functional if it accomplishes a desired goal and nonfunctional if it does not.
You’ll often read that echolalia is nonfunctional or stimming is nonfunctional or routines are nonfunctional I’ve talked about the fallacy of these beliefs in the past. Just because something appears to be nonfunctional to an observer does not mean that it is nonfunctional
to the person doing it.

Sometimes, however, echolalia or scripted language can be nonfunctional and I think it’s important for us to learn to spot those times,either in ourselves or in a loved one.

On the surface, my scripted (and probably echolalic) answers to the waitress were functional. She asked. I answered. She went away thinking that we’d completed a series of successful exchanges of information.

For me, however, it was a mixed bag. When the script lined up with my actual feelings, it was functional.

It was also functional in the sense that it allowed me to reflexively “pass” in a situation that wasn’t high stakes.
Not every social interaction is important. Sometimes the goal is simply to answer the other person so they’ll go about their business and leave you alone.

The alternative that night was repeated variations on this short yet uncomfortable exchange:

  • Me: I’d like an iced tea, please.
  • Waitress: Would you like sugar?
  • Me: No, I’d like it . . .
  • Me: [can taste what I mean but the word is nowhere to be found]
  • Me: [wow, cannot even produce a word that is close or any word at all]
  • Waitress: . . .
  • Me: [clearly, this flails hand gesture is not conveying what I mean, is my mouth stuck in this open position now? will this silence go on forever?]
  • Waitress: Unsweetened?
  • Me: Yes!

Scripting can grease the social wheels and I think those of us who have trained ourselves to pass will often unconsciously default to scripting or echolalia simply to conceal the fact that we can’t find the right word or we’ve lost the thread of a conversation. After all, there’s often subtle, unspoken social pressure to keep a conversation moving along.

Scripting becomes nonfunctional when an incorrect or inappropriate script is offered up automatically by a brain pressured to respond.
When your peers that you are with has observed that you were scripting with the waitress, but not with them. The waitress has other customers and her time at our table is limited. Whether it’s true or not, I feel like I need to come up with a snappy answer so she can move on and do her job. When I’m talking to friends that they know and are used to my pauses and edits of my form of communication.

The interesting thing to the autistic person about their exchanges with the waitress was how automatic they felt. After they didn’t get their water,I knew what I’d been doing,
but I still found it hard to stop. It was a bit like that moment of slow motion horror when you’ve dropped something and it hasn’t hit the floor yet.
On some level I saw what was happening but it was simultaneously too late to do anything to stop it. Every single time.

Recognizing the Difference

Automatic scripting can be as harmless as what I’ve described here or it can be a serious impediment to communication. Imagine if instead of a restaurant
I was at the emergency room and instead of a waitress I was talking to a doctor. Repeatedly scripting “I’m good” would be a nonfunctional and potentially dangerous form of communication.

There’s no hard and fast rule about whether scripting, echolalia and other atypical types of speech are functional or not. A big part of the equation is situational:

Scripting and/or echolalia can be functional if the speaker’s words are aligned with what the speaker would like to express. If not, they may be nonfunctional.
Scripting and/or echolalia can be functional if the speaker’s words are coded in a form that their listener understands, even if the literal meaning of the words does not relate to the speaker’s intended meaning. If the listener is unfamiliar with the coded meaning, the words may be functional for the speaker, but unusable on the listener’s part. Scripting and/or echolalia can be functional if they allow for low stakes interaction or connection, even in the absence of providing actual information.
Not all functional communication is transactional.
When language is nonfunctional, it’s often hard for the speaker to self-correct. In my experience, nonfunctional language doesn’t happen by choice but as a
kind of defense mechanism or a last ditch effort to keep the lines of communication open in some way, even if it’s an unreliable and potentially harmful way.

As the peers that you are with should have or would have learned to recognize when autistics are defaulting to a nonfunctional type of communication that may be counterproductive,
they’re increasingly become good at checking in with me. The simple act of pausing within a situation to say “Is _ what you mean (want/need/think)?”can be enough to take me out of my scripted or echolalia speech. And that’s a good thing, because too often my script isn’t matching up with my feelings or needs
in those situations.The autistic person is simply producing the easiest verbal responses to stay–or at least appear to stay–engaged.

Successful communication requires both a giver (speaker) and a receiver of words (listener).
When two people know each other well, they often have lots of little in jokes and code words they use, which are mostly meaningless to others.
Echolalia and scripting work much the same way.

If you have a family member who uses echolalic or scripted phrases to communicate, you may have the equivalent of a mental decoder that tells you that “put on your shoes” means “let’s go to the park” and “I want toast” means “I’m hungry.” The two of you may find it fun to interact by repeating animal sounds, playing with nonsense words or replaying scenes from a favorite movie or TV show. Sometimes functional communications used to accomplish a task and sometimes it’s simply a way to say, “I’m here, I see you and I like spending time with you.”


My advice here is: you mustn’t try to do a word for word translation, but needed to feel the emotion behind the words and try to understand the context that way.Remember being utterly confused or any other feeling/emotion is only part of being a human and suggestion, but now, today,

Ask the autistic person who you’re conversing to verify all of what has been shared before writing about it and he/she will affirm that you’re understanding it correctly.
In the past I would have gotten all tangled up in the specifics of what she was saying. I would have sought to reassure her about whatever it was.
But now, understand that these scripts can serve as so much more.
They can serve another purpose. They are less about the words spoken and more about the emotions that are attached to them.So when an autistic is happy they will often speak of some of her favorite people.They might reference something that happened more than eight years ago, but that made them feel safe, or a specific time when they were really happy.
I’ve always thought these memories were nothing more than that. Memories she enjoyed voicing out loud, but nothing more. But now.Now, from what I write, or I share with others verbally,you all should understand that they are very much more than random memories. They are a kind of communication bridge.
A way of saying, I’m happy! Or I’m feeling really sad, or this is causing me terrible anxiety, but it’s more than just a vague statement about a feeling,
it’s actually a brilliant way of trying to convey much more. It’s a way to communicate a whole series of feelings.

The more you all think about the conversation we had, the more I feel you are understanding. Those scripts are like flashbacks in a movie. They give us a tremendous amount of information and are symbolic of so much.

Important factors to raising a child with a positive identity

Even though, I don’t have children from what I’ve learnt from my parents and through my experiences is that the form of advice right now to give about this is:

Self-identity is one of the trickier contributors to children’s healthy development because you can’t “Do” things to your children to give them their self-identity. Rather, you can only create an environment that is positive and is accepting that allows their self-identity to evolve naturally. A part of the environment that supports the emergence of culture and media, which aim to stunt, distort, or co-opt that self-identity.

Here are some of my recommendations on how to develop your children’s self-identity amid the cacophony of messages they’re getting from media.

  1. Inoculate Your Children Against Media’s Messages

You can help your children to  resist any of the social media’s messages by priming them for those messages. When you consistently offer your children contrasting perspectives, you prime them to stand firm against the unhealthy messages. You can actively teach them “Executive functioning” skills, such as impulse control, critical thinking, and long-term planning, which will further gird them against the unhealthy messages. You can also help your children become sensitive to media’s messages which will enable them to recognize those messages for what they are and see them with a healthy scepticism.

  • Emphasize Healthy Values

You should focus on the  healthy values, morals, ethics and etiquettes  that help shape your children’s self-identities, for example, integrity, hard work, respect, responsibility, and compassion. When you emphasize values, you’re also sending the message that the values your children will be exposed to through today’s media aren’t important to you or healthy for them.

  • Highlight Your Children’s Intrinsic Passions and Strengths

Every child has some form of passions and strengths to what they can do. Even though, today the social media are telling your children that they should value themselves based on, for example, what they look like or what they have. You should be telling them that they should value themselves based on their unique capabilities, such as their academic, athletic, or artistic achievements, their relationships with family and friends, their passions and interests, and anything else they believe, feel, or do that originates inside of themselves. 

  • Keep Your Children Grounded in Reality

Your children are and will always be bombarded by messages and images from media that are entirely out of touch with reality (e.g., you can become rich and famous without any talent or effort). Yet, with persistent exposure, these unrealistic messages and images can become your children’s reality and, by extension, an unhealthy influence on their self-identity. Your goal is to constantly expose your children to the real world, namely, the one that is grounded in positive values, accurate depictions of appropriate behavior, reasonable expectations and consequences, suitable responsibilities, and the inevitable imperfections, challenges, and failures that are a part of the human condition.

  • Have Your Children Involved in Healthy Activities

The best way to keep your children away from unhealthy media influences is to keep them busy with healthy activities. Help them find activities that they love doing, whether academic, sports, or the arts, and that promote healthy self-identity. Research has shown that, for example, girls and boys who play sports have higher self-esteem, get better grades, and have fewer drug problems and lower rates of sexual activity.

  • Walk the Walk on a Healthy Self-identity

If you fall prey to media’s messages and you develop a “Manufactured” identity, your children have little chance of developing their own healthy self-identity. Be sure that you have your own internally derived and well-defined self-identity and that they see it clearly. If they do, they will follow your lead and seek to establish their own positive self-identity.

For much of your children’s early lives, you are their most important influence. They initially look to you to decide who they should be, what they should value, and what they should do. “Do as I say, not as I do” just doesn’t cut it when it comes to parenting. You need to make sure that you’re living the healthy life that you want them to lead. Whether it’s the people with whom you interact, the activities in which you’re involved, what you talk about, or what you eat or drink, your self-identity, as expressed through how you live your life, will dictate to a large extent your children’s self-identity.

  • Create a Healthy Family Lifestyle

Your children will base much of their self-identity on their most immediate environment. If your family life is informed by healthy values, choices, activities, and relationships, they are more likely to internalize those messages as their own.

  • Surround Your Children With Healthy People

You can surround your children with healthy people in their immediate social world who support everything that goes into the development of a positive self-identity. These healthy messages will not only prime your children to think, feel, and behave in beneficial ways, but they will also provide consistent exposure to contrasting healthy perspectives that can mitigate the influence from media.

  • Talk and Listen to Your Children

Your children have a tremendous capacity to communicate with you about what is happening in their lives, both good and not so good. Unfortunately, they’re often speaking in a language that parents don’t understand. If you listen to their messages, verbal, emotional, and behavioral, you’ll be better able to hear what they’re trying to tell you, particularly when they’re asking for help. Also, don’t be afraid to talk to your children, especially on topics that make you uncomfortable or they may not want to hear. Though they may not always seem like they’re listening, your children want your guidance and support because they know that they can’t go it alone and they need you are on their side.

  • Focus on Others

The one form of externalization of self-identity that is healthy is when your children direct their focus and energies onto helping others. Healthy self-identity is built when your children are not preoccupied with themselves and experience the intrinsic rewards of improving the lives of others. I encourage you to make compassion and community service family values and experiences to be shared

Dear Sisters [Smash Poetry]

This is a letter to all of the women who’s watching this video today who knows better than the Scarlet Letter (a letter that was worn by a person convicted of adultery)than their sisters.

THE SCARLET LETTER, Demi Moore, 1995, © Buena Vista

Dear sisters,
In my whole life and existence even when I began to talk and breathe that I struggled every day to trust wholeheartedly men and women especially men. From what we come to terms and face every day from bullying to body shaming to even a slut shaming other woman today.

I heard so many things from girls and women from a young age till the age they are at right now saying things like “I love her but she’s a dirty hoe,” “She’ll be much prettier without that type of mouth or nose,” “She’s not at all talented.” “She’ll never make it!” Think of the ratio. These are your sisters. We do not exist yet we try to really exist somehow in our own existence but not in silos.

I’m proposing you right now thst you are outgrowing your own team and opposition to one another. Your own experience or lack of each other. If we are all standing in belief for fighting for one another and equality. There has to be some form of camaraderie and bravery. So, this is a letter to every women who is watching who thinks they know or knows better than their own sisters in general to whisper about one another and backstab or showing such pure jealousy of their own sisters. There is no in progress when we march to a different beat of a song. There is no progress when we march in different directions. Correction here – listen up and listen closely! There’s no progress when we march in discriminatory sections.

White women show up for your sisters of color. Straight women show up for your sisters in the LGBQT+ community. Every women, yes you who is also watching this. Show up and have the guts to look at the differences in all women because this seems relate like the difference is thag it drastically of the question we ask ourselves is: ls it really progress? We need to question ourself or no progress at all? We can not afford to divide each other since right in the early days of what we were taught was to compare each other and to compete with one another no matter what it was or who it was. We will compete with one another to the very end to our own death. You are forever not devalued even if the woman you are sitting at or next to right now is to be perfect. But, let’s be real right now, there’s no such thing as being perfect.

We need to accept ALL our faults, our imperfections once and for all. You are forever not devalued if your sisters are achieving greatness and achieving much more than you. You are always of a greater price and value but don’t look at it as a price tag. If you value yourself,value you and only you.

Again, dear sisters, take a deep look and breath right now and look around you as well as in the mirror and see yourself a little clearer. Question: What type of woman do you represent and show for? Do hold yourself accountable for your own actions, sayings, and doings. Show up for the sisters that you might not know or even understand. Show up for those sisters who you might not even like you at all or even they may not like you at all. Show up for all of us.

For the unity and the choices, you will make, begins with you and you who you choose to stand up for. And, the choices in unity, you stand up for, ends with you also …. ….

The Controversy over Autism’s Most Common Therapy- Applied Behaviour Analysis Therapy

CONTENT TRIGGER WARNING: This is only based on some of the people on the autistic community about this delicate topic yet I have done my own research and would like to share my own personal opinion on this.

CONTENT TRIGGER WARNING AND DISCLAIMER

I am no medical doctor, I am just your normal Jo Blogs, so if you see anything out of the ordinary, do seek professional help for yourself or your loved one or seek second opinion for yourself or your loved one as I don’t condone self-harm.

Without a doubt there has been cause of concern and cause to question about Applied Behaviour Analysis therapy largely by some parents with autistic children along with
the autistic advocates, largely because of a fiercely articulate and vocal community of adults with autism. These advocates, many of them childhood recipients of Applied Behaviour Analysis , say that the therapy is harmful. They contend that  Applied Behaviour Analysis, is based on a cruel premise — of trying to make people with autism ‘normal,’ a goal articulated in the 1960s by psychologist Ole Ivar Lovaas, who developed ABA for autism. What they advocate for, instead, is acceptance of neurodiversity — the idea that people with autism or, say, attention deficit hyperactivity disorder or Tourette syndrome, should be respected as naturally different rather than abnormal and needing to be fixed.

Sure, it may be working for some children with Autism and not for others. I will have to say myself that what you do decide for your child is up to you. This into what I am sharing is just based on some of the research I’ve done as well as talking to some autistics on the autistic community to share what and how they feel about it all.

“Applied Behavior Analysis has a predatory approach to parents,” says Ari Ne’eman, president of the Autistic Self Advocacy Network and a prominent leader in the neurodiversity movement.
The message is that “if you don’t work with an ABA provider, your child has no hope.”

What’s more, the therapy has a corner on the market, says Ne’eman. Most states cover autism therapy, including, often, Applied Behavior Analysis — perhaps because of its long history. But in California, for example, parents who want to pursue something else must fund it themselves.

Whether Applied Behavior Analysis is helpful or harmful has become a highly contentious topic — such a flashpoint that few people who aren’t already advocates are willing to speak about it publicly. Many who were asked to be interviewed for the article of SpectrumNews declined, saying they anticipate negative feedback no matter which side they are on.
One woman who blogs with her daughter who has autism says she had to shut down comments on a post that was critical of their experience with an intensive
ABA program because the volume of comments — many from Applied Behavior Analysis therapists defending the therapy — was so high. Shannon Des Roches Rosa, co-founder of the influential advocacy group Thinking Person’s Guide to Autism, says that when she posts about Applied Behavior Analysis on the group’s Facebook page, she must set aside days to moderate comments.

Strong opinions on both sides of the issue abound. Meanwhile, parents like Quinones-Fontanez are caught in the middle. There’s no doubt that everyone wants what is right
for these children. But what is that?

A new view on Applied Behaviour Analysis:

Before the year of the 1960s, when autism was still poorly understood, some children with the condition were treated with traditional talk therapy. Those who had severe symptoms
or also had intellectual disability were mostly relegated to institutions and a grim future.

Against this backdrop, Applied Behavior Analysis at first seemed miraculous. Early on, Lovaas also relied on a psycho-therapeutic approach, but quickly saw its futility and abandoned it. It wasn’t until Lovaas became a student of Sidney Bijou, a behaviorist at the University of Washington in Seattle — who had himself been a student of the legendary experimental psychologist B.F. Skinner — that things began to click.

Skinner had used behavioral methodologies to, for instance, train rats to push a bar that prompted the release of food pellets. Until they mastered that goal,
any step they made toward it was rewarded with a pellet. The animals repeated the exercise until they got it right.

Bijou contemplated using similar strategies in people, judging that verbal rewards — saying “good job,” for instance — would serve as adequate motivation.
But it was Lovaas who would put this idea into practice.

In 1970, Lovaas launched the Young Autism Project at the University of California, Los Angeles, with the aim of applying behaviorist methods to children with autism.
The project established the methods and goals that grew into Applied Behavior Analysis Part of the agenda was to make the child as ‘normal’ as possible, by teaching behaviors such as hugging and looking someone in the eye for a sustained period of time — both of which children with autism tend to avoid, making them visibly different.

Lovaas’ other focus was on behaviors that are overtly autism-like. His approach discouraged — often harshly — stimming, a set of repetitive behaviors
such as hand-flapping that children with autism use to dispel energy and anxiety. The therapists following Lovaas’ program slapped, shouted at or even gave an electrical
shock to a child to dissuade one of these behaviors. The children had to repeat the drills day after day, hour after hour. Yet, as we we know that it’s important for us autistics to stim as this is an outlet to reduce stress and anxiety. I have shared more about stimming and its importance etc where you can watch here:

In these early years of the 1970s, videos of these early exercises show therapists holding pieces of food to prompt children to look at them, and then rewarding the children with the morsels of food.

Despite its regimented nature, the therapy looked like a better alternative for parents than the institutionalization their children faced. In Lovaas’ first study
on his patients, in 1973, 20 children with severe autism received 14 months of therapy at his institution. During the therapy, the children’s inappropriate behaviors
decreased, and appropriate behaviors, such as speech, play and social nonverbal behavior, improved, according to Lovaas’ report. Some children began to spontaneously
socialize and use language. Their intelligence quotients (IQs) also improved during treatment.

When he followed up with the children one to four years later, Lovaas found that the children who went home, where their parents could apply the therapy to some degree,
did better than those who went to another institution. Although the children who went through Applied Behavior Analysis didn’t become indistinguishable from their peers as Lovaas had intended, they did appear to benefit.

In 1987, Lovaas reported surprisingly successful results from his treatments. His study included 19 children with autism treated with Applied Behavior Analysis for more than 40 hours per week – “during most of their waking hours for many years,” he wrote — and a control group of 19 children with autism who received 10 hours or less of Applied Behavior Analysis

Nine of the children in the treatment group achieved typical intellectual and educational milestones, such as successful first-grade performance in a public school.
Eight passed first grade in classes for those who are language or learning disabled and obtained an average IQ of 70. Two children with IQ scores in the profoundly
impaired range moved to a more advanced classroom setting, but remained severely impaired. In comparison, only one child in a control group achieved typical educational
and intellectual functioning. A follow-up study six years later found little difference in these outcomes.

The methods promised parents something that no one else had: hope of a ‘normal’ life for their children. Parents began to demand the therapy, and soon it became the
default option for families with newly diagnosed autism.

“ Applied Behavior Analysis has a predatory approach to parents.” Ari Ne’eman

A touchstone

Lovaas’ Applied Behavior Analysis was formulaic, a one-size-fits-all therapy in which all children for the most part started on the same lesson, no matter what their developmental age.

Michael Powers, director of the Center for Children With Special Needs in Glastonbury, Connecticut, started his career working at a school for children with autism
in New Jersey in the 1970s. The therapist would sit on one side of a table, the child on the other. Together, they went through a scripted process to teach a given skill
— over and over until the child had mastered it.

“We were doing that because it was the only thing that worked at the time,” Powers says. “The techniques of teaching autistic kids hadn’t evolved enough to branch out yet.
” Looking back, he sees flaws, such as requiring children to maintain eye contact for an uncomfortably long period of time. “Five seconds. That was one skill we were trying
to establish, as if that was the pivotal skill,” he says. But it was artificial: “The last time I looked someone in the eye for five consecutive seconds, I proposed.”

I also shared a few videos about autistics doing eye contact is it worth it or not?
(Video reference: Autism/Why Eye Contact is hard for people on the Autism Spectrum)

Doubts grew about how useful these skills were in the real world — whether children could transfer what they’d learned with a therapist to a natural environment.
A child might know when to look a therapist in the eye at the table, especially with prompts and a reward, but still not know what to do in a social situation.

The aversive training components of the therapy also drew criticism. Many found the idea of punishing children for ‘bad’ behavior such as hand-flapping and vocal
outbursts hard to stomach.

Over the years, Applied Behavior Analysis has become more of a touchstone — an approach based on breaking down a skill and reinforcing through reward, that is applied more flexibly.
It’s a broad umbrella that covers many different styles of therapy.

Among the many variations now in practice include pivotal response training, a play-based interactive model that sidesteps the one-behavior-at-a-time practice of
traditional Applied Behavior Analysis to target what research shows to be ‘pivotal’ areas of a child’s development, such as motivation, self-management and social initiations.
Another is the Early Start Denver Model (ESDM), a play-based therapy focused on children between the ages 1 and 4 that takes place in a more natural environment —
a play mat, for example, rather than the standard therapist-across-from-child setup. These innovations have in part stemmed from the trend toward earlier diagnosis
and the need for a therapy that could be applied to young children.

Each type of Applied Behavior Analysis is often packaged with other treatments, such as speech or occupational therapy, so that no two children’s programs may look alike.
“It’s like a Chinese buffet,” says Fred Volkmar, Irving B. Harris Professor of Child Psychiatry, Pediatrics and Psychology at the Yale University Child Study Center
and lead author of “Evidence-Based Practices and Treatments for Children with Autism,” a book many consider the go-to reference for Applied Behavior Analysis

As a result, when asked whether Applied Behavior Analysis works, many experts respond: “It depends on the individual child.”

Today, Lovaas is viewed with the same kind of respectful ambivalence afforded Sigmund Freud. He’s credited with shifting the paradigm from hopeless to treatable.
“Lovaas, may he rest in peace, was really on the forefront; 30 years ago, he said we can treat kids with autism and make a difference,” says Susan Levy,
a member of the Center for Autism Research at the Children’s Hospital of Philadelphia. Without his passion, says Levy, many generations of children with
autism might have been institutionalized. “He has to get credit for going out on a limb and saying we can make a difference.”

Testing Applied Behavior Analysis

Given the diversity of treatments, it’s hard to get a handle on the evidence base of Applied Behavior Analysis . There is no one study that proves it works. It’s difficult to enroll
children with autism in a study to test a new therapy, and especially to enroll them in control groups. Most parents are eager to begin treating their children
with the therapy that is the standard of care.

There is a large body of research on Applied Behavior Analysis , but few studies meet the gold standard of the randomized trial. In fact, the first randomized trial of any version of
Applied Behavior Analysis after Lovaas’ 1987 paper wasn’t published until 2010. It found that toddlers who received ESDM therapy for 20 hours a week over a two-year period made significant gains over those who got the usual care available in the community.

That year, a report from the U.S. Department of Education’s What Works Clearinghouse, a source of scientific evidence for education practices, found that of 58 studies
on Lovaas’ Applied Behavior Analysis model, only 1 met its standards, and another met them only with reservations.

Those two studies found that Lovaas-style Applied Behavior Analysis leads to small improvements in cognitive development, communication and language competencies, social-emotional development,
behavior and functional abilities. Neither of the high-standard studies evaluated children in literacy, math competency or physical well-being.

The following year, the U.S. Agency for Healthcare Research and Quality commissioned a stringent review of studies on therapies for children with autism spectrum disorders,
with similar results. Of 159 studies, it deemed only 13 to be of good quality; for Applied Behavior Analysis -style therapies, the review focused on two-year, 20-hour-a-week interventions.

The review concluded that early intensive behavioral and developmental therapies, including the Lovaas model and ESDM, are effective for improving cognitive performance,
language skills and adaptive behavior in some children. The results for intensive intervention with ESDM in children under the age of 2 were “preliminary but promising.”
There was little evidence to assess other behavioral therapies, the review’s authors wrote, and information was lacking on what factors might influence effectiveness and
whether improvements could carry over outside of the treatment setting.

Levy, who served on the review’s expert panel, says although the evidence in favor of Applied Behavior Analysis is not all of the highest quality, the consensus in the field is that Applied Behavior Analysis -based therapy works.

“There is a lot of good clinical evidence that it is effective in helping little kids learn new skills and can appropriately intervene with behaviors or characteristics
that may interfere with progress,” says Levy. There are also other types of Applied Behavior Analysis that might be more appropriate for older children who need less support, she says.

Broadly speaking, the body of research over the past 30 years supports the use of Applied Behavior Analysis , agrees Volkmar. “It works especially well with more classically challenged kids,” Volkmar says — those who may not be able to speak or function on their own. These are, however, exactly the people that anti-ABA activists say need protection from the therapy.

Most experts acknowledge that there is a segment of children for whom Applied Behavior Analysis might be less appropriate — say, those who don’t need much support. One active area of research is scanning the brains of children to try to understand who responds and why. “Probably, as we go further down this path, we’ll see kids whose brains don’t change in response to treatment. They’re going to emerge as an important group,” says Volkmar. “We don’t know enough about them.”

Being able to identify those children who don’t have the expected neurological response — or being able to classify those who do into meaningful groups —
might make it possible to fine-tune therapy.

“One day, it would be nice to match the treatment approach based on more information from these profiles rather than one-model-fits-all treatment,” says Karen Pierce,
co-director of the Autism Center of Excellence at the University of California, San Diego, who uses imaging to study people with autism. “If we’re more informed,
the treatment will be more successful.”

The pushback

In December 2007, a series of signs in the style of ransom notes started appearing around New York City. One read, in part, “We have your son. We will make sure he will not be able to care for himself or interact socially as long as he lives.” It was signed “Autism.” The sign and others were part of a provocative ad campaign
by New York University’s Child Study Center.

The campaign unintentionally provoked an onslaught of criticism and rage from some advocacy groups against the center, which offers Applied Behavior Analysis . Many of the vocal activists once received Applied Behavior Analysis , and they reject both the therapy’s methods and its goals.

Ne’eman, then a college student, was at the forefront of the pushback. One major criticism of Applied Behavior Analysis the continued use of aversive therapy including pain,
such as electric shock, to deter behaviors such as self-injury. Ne’eman cites a 2008 survey of leaders and scholars in the field of ‘positive behavior interventions’ —
Applied Behavior Analysis techniques that emphasize desirable behaviors instead of punishing disruptive ones. Even among these experts, more than one-quarter regarded electric shock as sometimes acceptable, and more than one-third said they would consider using sensory punishment — bad smells, foul-tasting substances or loud or harsh sounds, for example. Ne’eman calls these numbers “disturbing.”

He and others also reject what they say was Lovaas’ underlying goal: to make children with autism ‘normal.’ Ne’eman says that agenda is still alive and well among Applied Behavior Analysis therapists, often encouraged by parents who want their children to fit into society. But, “those aren’t necessarily consistent with the goals people have
for themselves,” he says.

The core problem with Applied Behavior Analysis is that “the focus is placed on changing behaviors to make an autistic child appear non-autistic, instead of trying to figure out why
an individual is exhibiting a certain behavior,” says Reid, a young man with autism who had the therapy between ages 2 and age 5. (Because of the controversial nature
of Applied Behavior Analysis and to protect his privacy, he asked that his full name not be used.) The therapy was effective for Reid. In fact, it worked so well that he was mainstreamed into kindergarten without being told he had once had the diagnosis. But he was bullied and picked on in school, and always felt different from the other children
for reasons he didn’t understand, until he learned in his early teens about his diagnosis. He had been taught to be ashamed of his repetitive behaviors by his therapists, and later by his parents, who he assumes just followed the experts’ advice. He never realized these were signs of his autism.

Reid says he worries Applied Behavior Analysis forces children with autism to hide their true nature in order to fit in. “It’s taken me a long time to not be ashamed of being autistic,
and that only came because I got the chance to learn from other autistic people to be proud of who I am,” he says.

“There is a lot of good clinical evidence that it is effective in helping little kids learn new skills.” Susan Levy

The middle ground
There might be middle ground between critics and supporters of Applied Behavior Analysis , says John Elder Robison, bestselling author of “Look Me In The Eye,” who was diagnosed with Asperger syndrome at age 40.

Because of his late diagnosis, Robison did not receive Applied Behavior Analysis himself, but he has become involved in the issue on behalf of those who did. He envisions a place for Applied Behavior Analysis for people with autism — as long as it’s done well. That means a focus on teaching skills, rather than efforts toward normalization or suppressing autism-related behaviors: helping a child who could not communicate begin to talk and engage with other kids at school, for instance. “That is life-changing in a good way,” he says. Ditto an Applied Behavior Analysis therapist who helps a high school or college student become more organized. The emphasis should be on learning to function in areas the individual chooses, not on changing who she is, Robison says.

This approach will require oversight from people with autism, says Robison. “ Applied Behavior Analysis programs and practitioners are going to need to accept guidance from adult versions of people they propose to treat,” he says. “What was not clear in the past is that we are the clients; we [should] have a say in what happens.”

Advocates say scientists also need to be open to the fact that Applied Behavior Analysis might not work for all. There is increasing evidence, for example, that children with apraxia,
or motor planning difficulties, can sometimes understand instructions or a request, but may not be able to mentally plan a physical response to a verbal request.

Ido Kedar, who at 16 published his own memoir, “Ido in Autismland: Climbing out of Autism’s Silent Prison” writes on his blog that he spent the first half of his life
“completely trapped in silence.” Kedar received 40 hours a week of traditional Applied Behavior Analysis therapy, in addition to speech therapy, occupational therapy and music therapy. But he still could not speak, communicate non-verbally, follow instructions or control his behavior when asked, for instance, to pick up the correct number of sticks.
Kedar understood the request, but was unable to coordinate his knowledge with his physical movement. He was humiliated when the Applied Behavior Analysis therapist reported that he had “no number sense.”

Many researchers who study Applied Behavior Analysis welcome input of voices like Kedar’s. “I feel like it is the most wonderful, amazing thing to be able to talk with adults with autism about their experiences,” says Annette Estes, professor of speech and hearing sciences at the University of Washington in Seattle. “We all have a lot to learn
from each other.” Estes led two studies of ESDM for children with early signs of autism. She says the worst stories she has heard are not from people
who had traumatizing therapy, but from those who got no therapy at all.

“They have horrible memories of being bullied at school and [having] no one to help them or include them or help them make friends or handle tricky social situations,”
she says. “I get letters from people begging us to expand services to adults to help them learn how to date and be less lonely and isolated.”

To end this: there is not likely to be an easy end to this discussion, and in the meantime, parents must do the best they can.

64 Myths about Grief that needs to just STOP

Stop! Do you know what you’re saying and doing right now, isn’t the right way of handling the situation for others that are grieving for their loved ones?
This is just a bit of a shorter version to the reading you’re reading right now. Feel free to view this as well to gain a better understanding.

Grief myths . . . they sure as hell drive me crazy. And, I am sure that it would drive you crazy too when you hear/read them somewhere, whether it is on the Internet or just from others around us.

“Why did you say this in the first place?” Have you heard of think before you speak? Nope, I see that you’ve clearly haven’t!

There are just so many of them, they come out in so many ways, and they make our grief so much more difficult.  Friends and family have unrealistic expectations about what or how our grief will or should look like because of these myths.  Heck, truth to be told that sometimes WE have our own unrealistic expectations because of these myths.  So today we are setting out to dispel about 64 myths about grief yet there are more that you may have heard once and for all!

Disclaimer: what makes many of the things on this list myths is that they are not universally true.  This does not mean they are never true.  This is a very very important distinction, so keep it in mind as you read/watch the video that will come live soon on my channel. Also, there are some common themes with these myths so, where applicable, I have clustered the myths by themes in different categories if it made sense to do so.

Okay, as Eleanor would say, let’s dive in!

1. Grief has an endpoint.

Sorry friends, grief is going to be with us forever. It’s a part of us and after all we are still humans.  This isn’t a bad thing, though! Don’t get me wrong!  It just means that when we lose something or someone we loved deeply, that loss will be with us in some way forever.  Grief may feel different or become more manageable to many of us, but it will always be there and that’s okay.  Too bad people often make us feel like we should have reached the “end” of our grief.

2. Once you are done grieving, life  will return to “normal”.

All the things you’ve heard about getting over grief, going back to normal, and moving on – they are misrepresentations of what it means to love someone or something like your pet who has died. I’m sorry, I know us as human-people that does appreciate things like closure and resolution, but this isn’t how grief works. 

This isn’t to say that “recovery” doesn’t have a place in grief – it’s simply ‘what’ ‘how’ ‘when’ we’re recovering from that needs to be redefined. To “recover” means to return to a normal state of health, mind, or strength, and as many would attest, when someone very significant dies, we never return to a pre-loss “normal”. The loss, the person who died, our grief – they all get integrated into our lives and they profoundly change how we live and experience the world.

What will, hopefully, return to a general baseline is the level of intense emotion, stress, and distress that a person experiences in the weeks and months following their loss.  So perhaps we recover from the intense distress of grief, but we don’t recover from the grief itself. 

3. There is a consistent and predictable timeline for grief.

My questions to ask you all is this while you’re reading and watching my video when it comes to light is this:

  • How long does it take to fall in love?
  • How many seconds pass before a parent loves their newborn child?
  • How many arguments and rivalries can the bonds of sibling-hood withstand?
  • How many heart-to-hearts and late-night phone calls before you know a friend is true?

These are silly questions, aren’t they that I am asking to you? They’re like most riddles with no answer. There’s no scale to measure love or to quantify the bonds of friendship and family.It reminds me of one of my favorite lullabies, appropriately titled ‘The Riddle’. It’s a really simple song that my mother used to sing when I was young. It goes…

I gave my love a cherry that had no stone.
I gave my love a chicken that had no bone.
I told my love a story that had no end
I gave my love a baby, with no cryin’.

How can there be a cherry that has no stone?
How can there be a chicken that has no bone?
Whoever heard a story that never ends?
How can there be a baby with no cryin’?

Well a cherry when it’s bloomin’, it has no stone.
A chicken when it’s pippen’, it has no bone.
And the story of ‘I love you’ will never end.
A baby when it’s sleeping, there’s no cryin’.

“The story of I love you will never end”; what a beautiful lyric. What a true lyric.Love, connection and caring, these are things that live on; they don’t just end….you know it…I know it…it’s just common sense, people. So why then do we often hear this questions like these?

“How long does grief last? When will it end? When will I be over it?”

If grief is the result of losing someone we love and care for, then there’s no logic that can be applied or formula that can be used in determining how long it will last. If you don’t believe me, just give it a try.

So feelings of grief will diminish, but not disappear. Grief is infinitas which means ‘being without finish’. Grief doesn’t end, but with time it should look different; hopefully more peaceful, connected, and positive. Here are a few small indicators you might be making progress in your grief. I find it important to note, you can take steps forward, yet still grieve your loved one. Just because you return to work, date, or decide to have a child does not mean you won’t continue to grieve the person you lost. The capacity you have to be happy, enjoy life, and love others exists in addition to the love you feel for your deceased loved ones. Because love…love is asininity.

  • You start to feel just a little more ‘normal’
  • You have more good days than bad
  • You experience an increase in energy and motivation
  • You remember memories fondly as opposed to experiencing them as grief triggers
  • You can constructively think about the loss of your loved one and the impact it’s had on your life
  • Your sleep patterns return to normal
  • You experience feelings of optimism about the future
  • Improvement in performance at work
  • You’re able to focus on personal health and wellbeing
  • You feel ready to date again, have more children, and/or make new friends.
  • Your relationships feel more functional and healthy
  • You feel as though you are ‘rejoining the human race’
  • You feel ready to get out of the house
  • You experience an increase in desire for emotional and physical intimacy

4. The first year of grieving is the worst.
5. Time heals all wounds.

Time does NOT heal all wounds. A more apt saying here is “IT’S WHAT YOU DO WITH THE TIME THAT HEALS.” Like any other aspect of life, mourning is an active, working process, not a passive one.

6. You recover from grief like you recover from a cold, it gets a little better every day until it completely goes away.
Nope, not true either.  There are going to be times that we will have our ups and downs, good days and bad days, good months and bad months.  No matter how much we wish it was, grief isn’t a straight line and the end point isn’t “all better”.

7.  If you are still talking about your loved one after ____ years it means you’re “stuck”.
8. If you still display photos of your loved one after ____ years it means you’re “stuck”.
This one here is controversial and may have many differences of opinions on this myth yet when I have been thinking is it coincidence or some form of trend to keep and/or display photos of your loved ones after passing?

I’m sure this has been a non-issue for many of you, but for others it’s not quite so straightforward. It just makes me immensely sad to think of some widow or widower stuffing photos into a box because someone made them feel that leaving photos up is wrong, abnormal, or an indication that they are stuck in their grief.

There are reasons why people hold on to photos and there are reasons why people don’t. Here are a few, but not all, of those reasons.

Why People Hold on to Photos:

For children and/or other family members…like brothers, sisters, sons, daughters, grandsons, and granddaughters. When someone dies, his or her branch on the family tree doesn’t just fall off. That person is still a part of the family and hiding reminders of them, even if you would prefer to do so, can make other family members feel like their loved one’s memory is being erased.

Because you’re still a family: I have 5 brothers and sisters and, as I’ve said in past posts, we all still consider our mother to be a part of our family. She exists in memory and she continues to influence our family to this day. Whether her photo hangs on the wall has no bearing on her prominence in our family; but memories and moments involving her are an important part of our history. So why shouldn’t they exist in our homes?

Photos also give future generations a chance to connect with their deceased ancestors and family history. How else would you know you have your great grandmother’s nose or see aunt Carol smiling with her prized roses? Anyway, what was the point of taking photographs of these people if you didn’t plan on looking at them later on down the road?

Nostalgia and Memories: This is the most common-sense reason and why many people take pictures in the first place. Photos preserve memories like pre-school graduations, birthday parties, kids posing happily with artistic creations, weddings, etc. You know these moments are fleeting and in time our brain will no longer be able to remember them with the same vivid imagery, so you take photos.

Photos can make you smile, laugh, cry and remember. If you don’t believe me just ask Kodak, Canon, Shutterfly, Instagram, Facebook or Apple. Mankind’s penchant for taking and sharing images is stronger than ever.

Photos are tangible: One of the most difficult things about losing someone is the feeling that their memory is fading. Their smell, voice, and the feeling of their embrace – you wish for them to appear in a dream just so you can remember these things again. Photos are an accurate and literal reminder of your loved one.

They like photos: Dude, some people just really like photos. Put an avid camera clicker together with someone who really likes their family and what do you get? You get photo album after photo album of family members and friends. Accept it.

An appreciation for history: Some people just really care about history. My older brother, for example, is a history buff. He will leave no stone unturned in archiving our family history. It’s pretty cool and I’m certain our family’s next generation will appreciate his efforts; but seldom does a letter, film negative, or VHS recording that goes unturned in his pursuit.

In honor and remembrance: Many people prominently display photos of deceased individuals to honor them. I have wasted an irrational amount of time walking down the halls of Johns Hopkins Hospital looking at dead doctor after dead doctor. Why are they all hanging there? To honor and give them their place of prominence in an institution they helped to create and grow.

Portrait paintings of the rich, powerful, important and influential have been commissioned for countless microcosms throughout history. Walk the hall of any government building, club, or business and you will see this is true. In the same vein, it should come as no surprise that someone might see the family portrait as a way of honoring and paying tribute to individuals they love and adore.

Why People Don’t Have or Display Photos:

Photographs are a grief trigger or are too hard to look At: As we’ve established, many people find looking at photos of their deceased loved one to be very difficult. They may not choose to get rid of photos, but they might choose to put them away for a while. Sometimes people will continue to display photos even though it’s hard because they feel putting them away is disrespectful or means they are forgetting.

I think it’s probably incorrect to look at the act of putting photos away as a signal someone is ‘moving on’. Part of grieving well is learning to integrate the deceased loved one’s memory and being able to look at photos of deceased loved ones and feel happy or positive emotion is often a signal someone is doing better.

Grievers should feel okay about putting away photographs if they need to, this in no way means you are forgetting. Just because you put their photo away doesn’t mean the photos are gone forever. Though they may be too hard to look at right now, there will hopefully come a day when you can look at them and also remember fond memories.

Important Note: If you have children in the home, I would consider this more carefully. Consistency and connection are important for children and they may not understand the complicationed emotions and actions of adults. Please e-mail us if you want more clarification on this topic.

Photos are a grief trigger for others: Although you may be okay with photos, others in your house may not be. Together you may decide to put away photos away or you may arrive at some other compromise.

There aren’t any: Sadly some people don’t actually have any photos of their loved one. This is often the case with the death of a young child or baby, when someone has been distant or estranged, if the family photos were lost or destroyed, or if the person was just generally camera shy.

To avoid judgment or having to explain: Some may worry that others will judge their coping; some grievers may feel internal and/or external pressure to put the photos away, and some people may put photos away to avoid having to answer questions from visitors who didn’t know their loved one.

Bad memories: Not everyone has a past full of happy moments and fond memories. Old photos may be a reminder of a past they would just as soon forget.

Photos make them feel stuck: For some it may feel difficult to move forward when reminders of the past are everywhere. For this reason they may choose to put a few or all of the photos away.

9. If you haven’t gotten rid of your loved one’s belongings after ____years it means you’re “stuck”.

10.  If you still cry when you think/talk about your loved one after ____ years it means you’re “stuck”.

11. Women grieve more than men.

We all are usually pretty hesitant to even hint at categorizing, labeling or classifying grief. There are so many different grief responses that can and should be considered as ‘normal’ and no two people will have the exact same feelings and experiences after a death, not even those from the same family, region, religion, or culture. All that being said, however, there’s merit in examining how those with similar traits typically view and interact with the world, as long as we do it with taking it as a grain of salt.

We don’t always think of gender as complicated because we sometimes confuse it with ‘sex’, which refers to our biological makeup and determines what box we check at the DMV.  Gender is not actually a matter of fact, as psychologist Dr. Stephanie Shields of Pennsylvania State University notes, “…Gender is something that one practices (in nearly every sense of the word), rather than only what one inflexibly is.” Societies, cultures, and even families have differing views on what it means to be prototypical male or female and it is rare that real-life individuals ever fit perfectly into these molds.

Today, while I am writing this to you as you’re reading this I would like to share where the similarities and differences might lie. In conceptualizing grief and gender, I want us all to always remember these things exist on a continuum.

Although men are often thought of as “less emotional,” I think it’s important to quickly discredit the notion that men don’t feel the same intense grief emotions as women. Prominent grief researcher, Kenneth Doka, and his colleague Terry Martin have already served up a heaping bowlful of food for thought on this topic in their book Grieving Beyond Gender.  In this book, they outline different grieving styles which they associate with being characteristically “masculine” or “feminine”, although they note that these styles exist on a continuum and that gender is merely a contributing factor.

In general, our culture has come to expect people to grieve in an emotional way, which is characteristically more female but this isn’t always the case. Men may just grieve in a different way to females. It’s easy to put things like tears and sadness into the context of grief and when we see them we say, “Ah yes, this person is grieving appropriately”. Doka and Martin associate this type of grieving with the intuitive grieving style.  
Intuitive grief is experienced mainly in terms of feelings and emotions – “I felt sad” or “I felt angry” – and the grief response is usually focused on exploring and expressing these emotions – “I cried all night” or “I got so mad I couldn’t think.”

Intuitive

However, not everyone likes to get up close and personal with their feelings. So although people may experience the same type of emotions, some people might feel and express them differently. Doka and Martin associate this type of grieving with the instrumental grieving style. Instrumental grief is experienced in more physical and cognitive ways – “I couldn’t stop thinking about what happened” or “I felt like I couldn’t breathe.” The instrumental grief response is expressed in physical, cognitive or behavioral ways and looks more like ‘doing’ or ‘taking action’.

Although instrumental grievers might not see a direct correlation between their feelings and their response, if asked what they “did” in response to their loss as opposed to what they “felt,” they might say things like they spoke about the person a lot, created a lasting memorial, immediately found ways to further their loved one’s legacy, or they got involved in charity or activism in their loved one’s memory.  This type of grief expression can be a bit more difficult for outsiders to discern so others might worry the person isn’t dealing with their emotions when in reality they are just dealing with them differently.

instrumental

Doka and Martin are in no way saying this is how men grieve and this is how women grieve.  Remember that continuum we mentioned?  Well, these theorists say that most of us fall somewhere along the continuum between intuitive and instrumental grief and have what they call a blended experience.  People who fall on this continuum borrow coping tools from both ends of the spectrum.

blended

Now, when it comes to gender there are a lot of societal, cultural, and personal expectations telling us how we should feel and react; men should be strong and stoic and women should be emotional and sensitive.  These assumptions are really unhelpful because a lot of the time they don’t fit, yet we might feel ashamed, guilty, or weak for not feeling or acting our part.

According to Martin and Doka, dissonant grief emerges when the way someone’s grief is naturally experienced and expressed clashes with what they think is expected and acceptable. Confusion, shame, and repression can emerge when someone who is typically “strong” or unemotional becomes overwhelmed by emotion or someone who expects to be flooded with feelings finds that they aren’t.

Martin and Doka represent just one perspective on how gender-related characteristics can impact grief, but I think their theory encourages us to consider the ways in which gender can influence grief while being mindful that there is immense variability in what gender actually means on an individual level. It is important as people who are grieving or as friends, family and support workers, to be open to a range of grief responses regardless of our expectations.

12. Men don’t want to talk about their grief.

Yes, they are also wanting to talk about their grief as that is just an understatement if we weren’t to have the males to talk about how they’re feeling. They’ll be dealing with grief in a different way yet there is still ways we can help them to grieve.
We know that there’s going to be a lot of people that wish to help us in anyway possible.
Grieving is an intensely personal journey. There may be stages but they don’t often come in order or stay in a neat line. They leap around in surprising and unpredictable ways. Friends want to help, to say the right things but often end up feeling they can’t get it right. Our responses and needs are different in the first mind-numbing days and months. Here are a few tips on how to be a good friend to somebody in the early fog and pain of grief.
Yes, they are also wanting to talk about their grief as that is just an understatement if we weren’t to have the males to talk about how they’re feeling. They’ll be dealing with grief in a different way yet there is still ways we can help them to grieve.
We know that there’s going to be a lot of people that wish to help us in anyway possible.
Here are somethings that you may be able to do to help with them to grieve as well as also this goes for us females too.

Ask: Do ask what they need and follow their request. If they say they need to be alone for a while, that’s what they need.

Food is love: Do speak with food. Even if the grieving are not eating, they have guests who will. And at some point they will eat a bit and how lovely to have a line-up of frozen meals and other necessities during the days and weeks of numbness that follow.

Send help: Do contact other friends and religious or community organizations close to the family that might create a regular list of people who bring over food, who help write thank-you notes, who offer to do errands or grocery shop or organize bills. Life stops entirely for grievers in those early weeks and months but, alas, it does not stop for the world. Help them navigate through the bleak upcoming weeks and months in practical ways.

Listen well: Do read their emotional signals. If you come by and she just wants a hug and cannot speak, don’t push to her speak. Just sit with her. Don’t grill her with questions to fill the awkward, aching silence. Be still. Be there.

Pain and the Brain: Do respect her boundaries. If she starts remembering something about her loved one and speaks it, then shuts down immediately from overwhelming pain, NEVER push or tell her “It’s important that you talk about him and remember him.” Her brain can only process this sensory overload in its own time and pace. Don’t make her feel guilty that somehow she’s doing it wrong.

Think of them first: Do not launch into your own grief story unless you sense that told gently, sensitively, it will offer something worth hearing. You may have to wait months or years for it to be useful to your friend. Remember, this is about your friend’s needs and story, not yours.

Grief’s Maid of Honor: Do not get sucked into some weird high school competition about who’s staying at her house, who she’s calling back, who she’s letting take the kids out. Different friends offer different strengths. Let her decide which ones to take from you and don’t let your own insecurities get in the way.

Suicide Alert: Do push if you feel they’re sinking into a dangerous abyss of isolation and depression. If she doesn’t return your calls and you are close friends, go over there and knock until he/she lets you in. If you had a good relationship before this loss, and she knew and trusted you before this, lean on that. If she’s not talking to anybody and nobody has seen or heard from her, get in there.

Building a foundation: Do ask if he/she would like you to help set up a foundation or fund or scholarship in the loved one’s name because people will want to contribute in some way and for some, writing a check is the way they feel most comfortable helping. If someone dies young, setting up a scholarship or fund in their name can feel comforting to the family. Or you can ask people to donate, in lieu of flowers, to a charity chosen by the family.

No giving up: Do not give up on him/ her. Do not call three times, e-mail four times and assume, well, he/she’ll call when she’s ready. There’s a balance you must strike between respecting her boundaries and abandoning a friend in desperate need. Use your instincts to figure it out.

Note: I did a video of what to say and do and what not to say and do to a grieved one which you can see here:
* What to say and do when someone dies: https://www.youtube.com/watch?v=fSYgAxSkIdE

Men are known to be the forgetful mourners while grieving for their loss.

13. You can only grieve a death.

14. You can’t grieve something you never had.

Regardless of the scenario, the loss of hopes and dreams can be incredibly hard to accept and cope with. These losses aren’t just felt at one time in a person’s life; true to grief-form, they pop up as milestones, reminders, birthdays, important events, regrets, and emptiness forever. I think the magnitude of this can be hard to recognize when looking at it from the outside in and I think those who experience the losses are often surprised by how hard “acceptance” is.

When we care deeply about something, it can be difficult to know when to let go. Sometimes our hopes are all we have to keep us getting out of bed in the morning. People always like to say things like, “It’s never too late to follow your dreams” and many times this is true. When there’s a chance to see your dreams through or there is still joy in the journey, by all means, keep going. But, here is the gist because this one can sound a little confusing: we grieve things we never had all the time.  If I always thought I would have children, then learn I can’t get pregnant, that is a loss I will grieve.  If I always imagined my future would look a certain way and it doesn’t, I grieve what I imagined it would be.  You get the idea.

The reality is, though, that some dreams will eventually be impossible and when our hopes for the future are truly futile, we have choices to make. We could hold on tight and keep carrying our hopes and dreams forward, but such a heavy and hollow load limits our capacity to find other more fulfilling alternatives. We could drop everything and walk around angry and bitter, but this distracts us from finding joy in the things we do have and leaves our arms empty. Or finally, we could find ways to grieve our losses and someday, if we’re lucky, we’ll gain enough peace and acceptance to embrace our option B.

Regardless of the scenario, the loss of hopes and dreams can be incredibly hard to accept and cope with. These losses aren’t just felt at one time in a person’s life; true to grief-form, they pop up as milestones, reminders, birthdays, important events, regrets, and emptiness forever. I think the magnitude of this can be hard to recognize when looking at it from the outside in and I think those who experience the losses are often surprised by how hard “acceptance” is.

15. Your friends and family will always be the best support.

16.  Someone who experienced the same type of loss will definitely be supportive and understand what you’re going through.

Eeek, this one gets people into trouble A LOT.  This isn’t true, either. As everyone will grieve for their losses in different ways and just because we may have loss someone that’s important doesn’t mean it’ll be the same. Just because someone also lost a child, a spouse, a parent, a pet, whatever, it doesn’t mean your experiences will be the same.  Heck, they may not even be similar.  Sometimes people with similar losses end up being your best support, sometimes it is someone with a totally different kind of loss who you connect with.  You just never know.

17.  Grief follows a similar path and timeline for everyone.

I can think of a few things that’s more scary and unknown in life than coping with the death of a loved one.  If only there existed a map outlining the ‘typical’ experience of grief, we might know what is normal and the steps one should take to heal.  Of course, such a guide can never exist because grief is a reflection of the individual, their relationship with the person who died, the circumstances of the death, coping skills, and many other factors.

Although many of those who’ve come into contact with grief understand it’s variability, they still might set out in search of definitive answers and quick solutions.

  • How long will I feel this way? 
  • What is the best way for me to cope? 
  • Which grief theory is correct?  
  • What should I say to my grieving friend? 
  • I lost my husband and my friend lost her mother; whose grief should be more intense? 
  • Should I leave my grieving friend alone or continue to check in? 

The answer to each of these questions is either “I don’t know” or “that depends.”  Individual grief is unprecedented; it’s so personal that it looks different on everyone.  Sure we have theories, commonalities, and general truths to guide us, but these things can only help us to guess – not know.

Most of us have little experience with grief and so when a death occurs we have limited knowledge about how to proceed. Grievers want to feel better and those who love the griever want to help them in their hour of need. Naturally, all impacted by the death want to find solutions and want the comfort of knowing these decisions, judgements, and interventions are accurate and effective. After all, grief is a high-stakes situation; tensions are high, emotions are raw, and nerves are razor thin.  One wrong move and an emotional landslide may come tumbling down on everyone.

The trouble is, in the presence of stress and the absence of clarity we often rely on things like…

  • Emotion: My friend is in a lot of pain; quick think of something to take her pain away.
  • First Hand Learning:  I don’t know what will help my sister, but I know what helped me.
  • Vicarious Learning:  My friend thought a support group was very helpful to her when her husband died, maybe I should go to a support group.
  • Comparisons:  My brother isn’t struggling as much as I am, is there something wrong with me?
  • Categorizations:  I heard that people feel regret after a loved one dies from suicide, I wonder why I don’t feel the same.

These cognitive shortcuts make sense in many scenarios, and at times they are helpful with grief. Living in the unknown can be scary and paralyzing; of course we want to make sense of the senseless and put our trust in whatever clues seem to offer the quickest path away from ambiguity.  Sometimes these clues can lead us in the right direction, but many times they do not and this is especially true when we are talking about something as complex as individual grief.

It’s easy to get caught up in the search for black and white answers; we figure they have to exist because, after all, everyone experiences grief at some point.  As something so inherent to the human experience, how could grief be beyond comprehension? But to quote William Shakespeare, “Everyone can master a grief but he that has it.” Only when you are in the midst of grief do you understand, shortcuts do not exist and the only definitive answers you will find are the ones you arrive at yourself.  

Across the board, we need to figure out how to better tolerate the ambiguity and uncertainty of grief.  We need to have a healthy respect for its complexity and recognize that, although a few general and basic truths exist, on an individual basis much cannot be prescribed or predicted.  Above all, we need to stop looking for answers and focus our attention on understanding.

We may not have all the answers, but we do what we can.

18.  If you aren’t crying, then you aren’t grieving.

Some of us aren’t criers, get over.  It doesn’t mean there is something wrong with us.

19.  If you aren’t following “The 5 Stages of Grief” it is a problem.

MANY people don’t follow the 5 stages.  If they do, it is often not in order, they may skip steps, repeat steps, you get the idea.  This is just one theory about grief among many theories – you aren’t grieving wrong if your grief doesn’t fit in this box.

18.  If you aren’t crying, then you aren’t grieving.
Some of us aren’t criers, get over.  It doesn’t mean there is something wrong with us.

19.  If you aren’t following “The 5 Stages of Grief” it is a problem.

MANY people don’t follow the 5 stages.  If they do, it is often not in order, they may skip steps, repeat steps, you get the idea.  This is just one theory about grief among many theories – you aren’t grieving wrong if your grief doesn’t fit in this box.

20.  The only grief theory is Elizabeth Kubler-Ross’ 5 Stages because everyone knows it’s accurate.

21.  Grieving is a problem.

Nope, it is a natural reaction to loss.  We all, sadly, go through it.  Just because something is painful doesn’t mean we should avoid or ignore it.

22. The goal of grief is to “move on”.

23. The goal of grief is to “get over it”.

24. The goal of grief is to “find closure”.

Ah, the myth of closure, moving on, and getting over it.  Didn’t I mention from the get go that there is no endpoint?  We never tie up our grief with a nice little bow and move on.   That just isn’t how it works.  What we do is learn to carry it with us in meaningful and healthy ways.  We use it to continue a connection with the person we loved, while moving forward.

25. Certain types of loss are inherently “better” or “worse” than other types of loss.

Our experience with the aftermath of a death, the ‘grief’, is a culmination of who and what we lost and our individual ability to cope with this.  Our tolerance for pain differs and we all feel varying shades of hurt.  Loneliness, absence, regret, need, longing, guilt, stress, lack of support – how much of this do you live with and how much can you tolerate?

Even within a family, the same loss will affect individuals differently.  It would be useless to compare my grief to a mother, father, sister, brother, friend or anyone for that matter; as their worldview is different, their support system is different, and their feelings towards death and dying are not the same.  I live with a lot of regrets, does he/she? 

Grief is the loss of something we love and at its core, it is complex, complicated, and sneaky.  Its depth, its trajectory, and its timing are often unpredictable and surprising. We are limited in our ability to truly understand another’s grief because most of us have yet to fully understand our own. What we do have in common, is the experience of a broken heart and the wisdom to feel compassion for others facing similar pain

26. Young children don’t grieve
Age has a large influence on childhood grief and how children understand and react to the death of a family member, friend, pet, or close adult.  It is good to know where a child is likely to fall developmentally.  This will help you to better understand how they view the loss and will help you to make age appropriate choices about language and interventions.

Of course age won’t help you to predict exactly how a child will react, other factors will have an impact as well.  Maturity, past experiences, education level, socio-economic status, what part of the world you live in, and access to support resources are merely a few of the many factors that influence us all.

It is advised that with children of any age or background you should do the following:

  1. Acknowledge their presence, their importance, their opinions, thoughts, and feelings.
  2. Be patient and open minded.  Allow them to grieve in their own way.
  3. Be available – Sit with the child, listen to them, and answer their questions.
  4. Reassure them the circumstances that led to the death were extreme and it is unlikely other adults in their lives will die any time soon (unless this is untrue).
  5. Let them know that a range of different emotions are normal.
  6. Validate their feelings and do not minimize them.
  7. Check in with other adults involved in their life – teachers, school counselors, coaches.

I have put together a list of typical grief responses by age.  Again, every child is different and we can’t quantify all the unique and individual qualities of your child in this list.  If your child reacts in a way that concerns you then it might be a good idea to talk things over with an expert like a pediatrician, school counselor, or child psychologist.

Typical Grief Reactions by Age:

o-1:

* They have no ability to conceptualize death

* Their memory capacity for specific relationships is undeveloped.  Unless the person who died was a close caregiver, they may  have very little response.

* They may be aware that something is different or missing.

1-2:

* They do not understand the finality of death

* They are concrete thinkers.  It may feel callous to explain death in a straightforward way, but metaphors and euphemisms will be confusing.  Provide simple and clear explanations.

* If they are old enough to ask, they may inquire where the person is or when they will be back.

* They probably won’t understand there are factors beyond our control and won’t understand why the person chose to leave, particularly if the person who died was an adult.  Make sure to explain that death and leaving were not things their loved one chose.

*  They are not too young to sense the stress and emotion felt by grownups in their lives.

*  Sticking to their normal routine may provide a sense of security, normalcy, and comfort.

*  Give them attention and provide them with reassurance.

Signs of Distress may include increased irritability and crying, changes in eating and sleeping patterns, and/or withdrawing.  If these or any other behaviors concern you, you may want to discuss them with their pediatrician or seek outside counseling from a child psychologist.

2-4:

*  They still don’t understand the finality of death and still might see it as abandonment.

*  They see death as reversible or not permanent.  Dead people are simply sick or asleep and can get better or wake up.

*  They may ask the same questions over and over; be patient and stick with the same straightforward explanation.

*  They may not have the words to explain how they are feeling.  You are likely to see expressions of grief through behavior and  through play with toys and/or drawing.

*  They may experience separation anxiety.  When you must leave the child, it might be helpful to prepare them in advance that you will be leaving and provide them with reassurance about when you will return.

*  They may feel the person’s absence in an intense way one moment and be back to happily playing the next.

*  They will be aware of changes in patterns and routine.  Provide them with a lot of reassurance, nurturing, and consistency.

Signs of Distress may include regressive behaviors in the areas of sleep, potty training, and/or eating.  They may become clingy.  They may appear irritable, confused or suffer from nightmares.  If these or any other behaviors concern you, you may want to discuss them with their pediatrician or seek outside counseling from a child psychologist.

4-9:

*  They are starting to develop the ability to feel guilt.  Guilt can be confusing for them and they may feel guilty for odd things.

*  “Magical Thinking” is seen around 4 years old.  This is when children believe their thoughts and wishes can cause things to happen.  For this reason children may irrationally feel responsible for the death because of thoughts or wishes they had prior to the death.  (Example:  I’m responsible for the death because I told my mom I hated her and wished she would go away).

*  They may be interested in the process of dying and ask ‘how’ or ‘why’ things have happened.  Their questioning may be repetitive.

*  They have begun to understand that death is not reversible or temporary, but still may believe that death only happens to some people and will not happen to them.

*  Death is often personified as things like ghosts and monsters.

*  They lack the words to express their emotions.  They may have strong feelings of grief and loss but can’t express this in appropriate ways.  They may express feelings through anger and frustration.

*  Symbolic play using drawings and stories can be helpful.

*  They may need permission and encouragement to grieve.  Encourage expression of feelings through talk, play, or physical outlets.

Signs of Distress may include regression, nightmares, sleep disturbances, and/or changes in eating.  They may engage in violent play.  They may try to take on the role of the deceased.  If these or any other behaviors concern you, you may want to discuss them with the school counselor or pediatrician or seek outside counseling from a child psychologist.

9-12:

*  They understand the finality of death and that everyone eventually dies, however they still may engage in denial that it will happen to them (don’t we all?)

*  They are curious about the physical aspects of death – what does the body look like?  what does it feel like? etc.  Provide straightforward explanations.

*  They know how to express their feelings and emotions, but they may choose not to.  Encourage them to express the range of feelings they are having.

*  They may be concerned with how others are reacting to the death.  What is the right way to react?  How should they react?

*  Involve them. Allow them to give input and make choices regarding funerals, memorials, belongings, etc.

Signs of Distress may include having problems at school, withdrawing from friends, acting out, disturbances in sleeping and eating, an overwhelming concern with the body, and/or role confusion. If these or any other behaviors concern you, you may want to discuss them with the school counselor or pediatrician or seek outside counseling from a child psychologist.

12-20(ish). 

*  They are capable of having a more adult perspective of death.

*  Involve them. Allow them to give input and make choices regarding funerals, memorials, belongings, etc.

*  They are able to think abstractly about death and related concepts such as afterlife.

*  They may try to make sense of things, philosophize, and/or search for meaning.

*  Their mourning may be more traditional – extreme sadness, anger, denial.  Even though they are capable of expressing grief they may chose not to.

*  They may work to give the appearance they are coping well when they are not.

*  They may feel forced to act as a consoler and comforter for younger children or adults.

*  Be available, listen, and encourage them to talk about it.  Do not attempt to minimize what they are feeling.

*  Set a good example by speaking about your own feelings surrounding the death (without putting them in the role of the comforter).

*  They may be more willing to talk about grief with people outside of the family.  Grief camps and support groups may be helpful.

*  They may act out or engage in dangerous behavior such as risk taking, drugs, alcohol, etc.

Signs of Distress may include having problems at school, depression, anger, suicidal thoughts, rule breaking, role confusion, and/or acting out.  If these or any other behaviors concern you, you may want to discuss them with the school counselor or pediatrician or seek outside counseling from a psychologist.

27. Children should not attend funerals.
This is not true. We know that they’re allowed to be at funerals so that they can deal with what they need to do for themselves.

Parents and family members are often full of hesitations.  What if the child is too young to understand? What if the funeral is traumatic or distressing for the child?  What if it is upsetting for the child to see adults cry?  What if other people at the service will think it is inappropriate that a child is there?

When it comes to funerals and children, the first question always seems to be if a child “old enough” to attend.  How young is too young to go to a funeral?   I can’t answer this question for you, because in reality it is the wrong question to ask. Age has nothing to do with her a child should attend a funeral.  Really, it doesn’t.  There is no such thing as “too young” as long as the appropriate steps are taken and you are thoughtful about your child is and what will work for them.  Attending funerals, even for children of a young age, can be helpful and positive as long as handled appropriately.  I have no doubt the reason my early memories of funerals are positive is because my parents followed so many of the recommended guidance for preparing kids for funerals (whether they knew it or not).  So the better question is, what are the steps you should go through when considering your child attending a funeral?

Leave it up to the child.  It is important children are given the option to attend or not, and it is important their decision is respected.  If told they cannot attend without giving them a choice, children may feel abandoned or resentful.  If a child doesn’t want to go and is forced this can be distressing and traumatic.  Encourage your child to attend, let them know they are welcome and will be supported, but don’t push them.

Tell your child exactly what to expect.  Now, obviously this will need to start with a conversation about death.  If you are looking for tips on talking to kids about death you can see Eleanor’s post on the influence of age on understanding, as well as tips on language to use and not to use in talking to kids about death (aka stay away from euphemisms!).  Once you have had this conversation, it is important you explain to them what a funeral is all about.  Why do we have a funeral?  Who will be there?  How long will it last?  What will they do?  What will other people do?  Be specific – what is a casket or an urn, what is a burial, why will there be flowers, etc etc.

Help them prepare for what they will see.  Describe what the funeral home will look like, the casket, and the person who died (if it will be an open casket).  Many funeral homes now have photos online of their building and facilities, which you may be able to show a child in advance to help them know where they are going.  Also, some funeral homes offer family time before ‘the public’ is allowed to arrive, which can be a good time to bring the child without the chaos of other guests.

Assign a buddy.  Pick a family member or family friend who will take responsibility for being with buddied-up with the child.  They can be there to answer questions, provide support, and take the child out for a break or home if they decide they are ready to leave.  If you are going to be busy talking to people or busy it is important to be realistic that you may not be the best buddy for your child at the visitation or service.

Involve the child in the service.  Ask if they may want to write or draw something to place in the casket or display at the service, help choose flowers, an urn, or casket for the service, help pick photos for a slideshow or to display at the funeral home.  Depending on the age of the child, they may even wish to share some words at the service.

Let them know about emotions they may see or feel.  Kids will see adults being emotional and crying.  AND THAT’S OKAY.  Though adults are often fearful of this, thinking they need to be strong in front of their children, the reality is that kids seeing these emotions can be a good thing.  It lets kids know that it is okay to feel and express difficult emotions.  If they know you are sad, it may make it easier for them to talk about their sadness.  Just make sure they know this is something they will see and understand why people will be sad.

Warn them they may get mixed messages.  Adults say all sorts of things to kids about death and at a funeral they may hear many messages from many different people.  From using all those euphemisms (grandma is sleeping or grandma is in a ‘better place’) to hearing messages to ‘be brave’ mixed with other messages that it is ‘okay to cry’, kids may feel confused.  Explain why different adults may tell them different things, and reinforce what you want them to remember (what death is, that it is ok to cry, that nothing is their fault, they will be safe and protected, etc)

Respect their decision if they don’t attend.  Some children may feel strongly that they don’t wish to attend.  If that is the case, don’t force them.  Ask them if there is anything they would like to do on their own to say goodbye.  If it is a close family member, consider creating an audio or video recording of the service so the child can watch it later if they regret not attending.  You may also consider journaling about the funeral afterwards, while it is still fresh in your mind, so you can read it or talk about it with your child later.

28. Children are resilient, you don’t need to worry about them.

The good news, children certainly can be very resilient.  They myth?  That is doesn’t take effort, work, or support.  I once heard someone (I wish I could remember who . . . leave a comment if you know the source of this!) compare resiliency in children to children’s ability to learn a language.  It is much easier for children to learn languages than adults, but this does not mean they will learn a language if we don’t teach, coach and support them.  I have always liked this analogy.  Research shows us that childhood trauma can impact us through adulthood in countless ways, psychological and physical.  We need to give children the appropriate time, attention and tools to cultivate that resiliency. 

29.  Not having a funeral will hinder your ability to grieve or “find closure”.
There are many other ways that you can do if you don’t attend to a funeral.

If you are seeking alternatives to a funeral that may help meet some of the needs that are found in a tradition funeral, or if you are planning a memorial and trying to think a bit outside the box, today’s post is the post for you.  Today we will be sharing some alternatives to a funeral, large and small, and we are asking you to chime in by leaving a comment if you have other ideas.

1)  Create a shrine in your house.  Okay, the word shrine probably makes this seem creepy.  We aren’t talking about a creepy shrine here, just a simple area in your house that has photos, objects, and anything else meaningful that reminds you of your loved one.  The process of putting this together can be meaningful and symbolic.  It is something you can do by yourself, or together with family and friends.  Set aside a specific time to do this.  Especially with children, this is a great opportunity to share memories and say goodbyes.  They may wish to draw pictures, write a letter, or make other artistic items to add to the shrine.

2)  Hold a birthday or anniversary memorial.  You may have skipped a funeral, but this doesn’t mean you can never have a memorial.  If you are feeling a lack of resolution, pick another meaningful day in the coming months to have a memorial.  This could be anything from a memorial dinner to a formal memorial service – decide what works for you.  A memorial can actually allow an opportunity for more family and friends to attend, as there can be more notice given than for a funeral.

3)  Create a personal ceremony at the gravesite.  People have different feelings about visiting the gravesite, some people visit daily or weekly, and others never visit a grave.  There is no right or wrong – it just happens that some find the gravesite a comforting place, somewhere they are close to their loved one, and others do not.  If you are someone who does visit the grave, there are many meaningful rituals that can bring comfort.  In the Mexican tradition of Day of the Dead, thousands of people flock to the graves of their family members to clean and decorate the graves.  Though this may not be part of your cultural tradition, it can be a meaningful and comforting ritual to adopt.  Pick a day – it could be a meaningful day or any old day, and plan something meaningful at the gravesite.  You may wish to invite others and turn this into a time of cleaning, decorating, sharing stories, and saying goodbye.

4)  Spread the ashes.  Not every family chooses to spread their loved one’s ashes, but if this is right for your family it can be a nice alternative to a traditional funeral.  From going to a single meaningful location, planning a boat trip to spread the ashes at sea, or taking ashes to multiple locations to spread, this can be a meaningful time and space to say goodbyes.  This can be done alone or with a group of family or friends.  You may even wish to spread the ashes somewhere your loved one always wanted to go, but was never able (think Martin Sheen in The Way)

5)  Create a new tradition.  The process of creating a tradition can alone be meaningful.  It may be a tradition of volunteering in memory of your loved one, visiting somewhere meaningful to your loved one,  creating an annual family dinner in your loved one’s honor, or anything else that seems right for you.  Creating this tradition can be a way to grieve together, if you choose to involve others, or a way to thoughtfully say goodbye and remember your loved one every year.

6) Skip the church and the funeral home.  If you are considering your options and you are put off by the idea of a traditional mass and a stuffy funeral home, because it just doesn’t seem to fit who your loved one was, start thinking outside the box!  You can hold a service anywhere.  Really! Anywhere!  Your house, their house, the beach, a park, a restaurant, a community center, a Moose Lodge, a bar, an art gallery, on a boat, in a box, with a fox . . .okay, you get the idea.   You don’t have to have one officiant and a eulogy.  You can open the floor to everyone to share their stories, memories, music, art, or anything else they wish to share.  Find some inspiration in the full Beyond Goodbye video.  We shared the trailer on Monday, but you can view the whole video here.  It is truly amazing.  Okay, and because I love it so much, here is the trailer again.

7) Plant a tree.  Okay, it doesn’t have to be a tree, but create something out in nature that symbolizes your loved one – it could be a tree, a garden, a bench, or anything else that makes sense for you.  This can create a meaningful space for you to remember and feel close to your loved one, and a small ceremony is totally appropriate when the tree is planted, bench is placed, etc.  You may even want to get a little plaque or stone marker to place at the site.

8) Create a memorial book.  One thing that often saddens people if there is no funeral is that they were not able to share stories or hear the impact their loved one had on others lives.  Unlike just a scrapbook or memory box (which you also may want to make!), a memorial book is created when multiple people all create a page in the book.  They can fill the page with memories, stories, things that person taught them, messages for the family, or whatever else they want to share.  This can be a hand made book, or you can purchase one

30.  You grieve less when you know in advance someone is going to die.

Anticipatory Grief: the nitty gritty

Here is the thing about grief – though we think of it as something that happens after a death, it often begins long before death arrives.  It can start as soon as we become aware that death is a likelihood.   Once death is on the horizon, even just as a possibility, it is natural that we begin to grieve.

Though this is different than the grief that follows a death, anticipatory grief can carry many of the symptoms of regular grief – sadness, anger, isolation, forgetfulness, and depression.  These complicated emotions are often coupled with the exhaustion that comes with being a caregiver  or the stress of being left alone when someone goes to war or is battling addiction.  We are aware of the looming death and accepting it will come, which can bring an overwhelming anxiety and dread.  More than that, in advance of a death we grieve the loss of person’s abilities and independence, their loss of cognition, a loss of hope, loss of future dreams, loss of stability and security, loss of their identity and our own, and countless other losses.  This grief is not just about accepting the future death, but of the many losses already occurring as an illness progresses.

When we know a death is imminent our bodies are often in a state of hyper-alertness – we panic whenever the phone rings, an ambulance must be called, or when our loved one deteriorates.  This can become mentally and physically exhausting.  The same is true of watching a loved one suffer, which is almost always part of a prolonged illness.  Caring for them as they suffer takes an emotional toll on us.  These things (and others) can contribute to a sense of relief when the death eventually comes, and a guilt that can come with that relief.   These feelings are common and totally normal when someone has experienced an anticipated death.   And yet we feel guilty for this relief, thinking it diminishes our love for the person.   It doesn’t, of course, but this relief can be a confusing feeling.  We sometimes need to consciously remind ourselves that the relief does not change the deep love we had for the person, rather it is a natural reaction to the illness.

There have been numerous studies showing that anticipatory grief can reduce the symptoms of grief after a death but, as always with grief, there are no rules.  There will be times that anticipatory grief may reduce the intensity of grief following a loss, then there are many times that the grief following a death is not impacted at all.  For a great review of the research on anticipatory grief (and understanding of why much of the data conflicts), see this article by Reynolds and Botha.  What is important to keep in mind is that if you are grieving with less intensity or for shorter duration than other losses because of the  anticipatory grief you experienced before the death, that is totally normal! On the flip side, if you do not feel your grief is diminished despite it being an anticipated death, that is totally normal too!  Convenient, eh?  There is no formula for how an anticipated loss will impact us because we all grieve differently.

Things to Remember When Dealing with Anticipatory Grief

  1. Accept that anticipatory grief is normal.  You are normal and feeling grief before a death is normal.  You are allowed to feel this type of grief.   Seriously.  This is a common phenomenon that has been documented for nearly a century.  You are not alone!
  2. Acknowledge your losses.  People may say annoying things like, “at least your mom is still here” that minimize what you are experiencing.  Allow yourself to acknowledge that, though the person hasn’t died, you are grieving.  Consider journaling, artphotography, or other creative outlets to express the emotions around things like acceptance of the impending death, loss of hope, loss of the person you once knew, loss of the future you imagined, etc.  Explore mindfulness  as a way of being present and aware of the many emotions your are coping with.
  3. Connect with others.  Anticipatory grief is common among caregivers, but unfortunately when all your time is consumed with caregiving you may feel totally alone and isolated.  Seek out caregiver support groups, either in your area or online, so you can connect with others who understand the challenges you are facing, including anticipatory grief.  
  4. Remember that anticipatory grief doesn’t mean you are giving up.  As long as you are there for support, you are not giving up on a family member or friend.  There comes a time where we often accept that an illness is terminal and that recovery is no longer a possibility.  Though it is a reality, there can be a feeling of guilt that comes with that acceptance.  Focus on what you are doing – still supporting, caring, loving, creating meaningful time together, etc.  You are shifting your energy from hope for recovery to hope for meaningful, comfortable time together.
  5. Reflect on the remaining time.  Consider how you and your loved one will want to spend that time together.  Though what we want may not always be possible, do your best to spend your remaining time together in a way you and your loved one find meaningful.  If your loved one is open to it, you may want to discuss practical matters, like advance directives and funeral arrangements to ensure that you are able to honor their wishes (rather than being stuck having to guess what they would have wanted).
  6. Communicate.  Just like we all grieve differently, anticipatory grief is different for everyone.  Expect that everyone in your family may be experiencing and coping with anticipatory grief in different ways.  Keeping the lines of communication open can help everyone better understand one another.  If you are planning for the remaining time to be meaningful and comfortable, make sure to include all the important family members and friends in those discussions.
  7. Take care of yourself.  I know, vague and way easier said than done!!  But it is true.  Check out our posts on self-care (for normal people)yoga, and meditation for some ideas of ways to take care of yourself.  Remember the old cliché, you can’t take care of others if you don’t take care of yourself.
  8. Take advantage of your support system.  Caregiving and anticipatory grief can be a long road.  Do an assessment of your support systems so you know which people may be able to help you out (and who you may want to avoid!).  We have a great support system superlative journaling activity to help you out with your assessment here.
  9. Say yes to counseling!  I know, there are still some of you out there who may think counseling is just for wackadoos.  I am here to tell you that is just not true!  Counseling is helpful for normal, everyday people who just need a place to process complicated emotions and have some you-time.  So just say yes to counseling if you are feeling overwhelmed with the feelings of anticipatory grief.  You can check out our post on finding a counselor here.
  10. Relief is normal.  In the case of anticipated loses there can be months, years, and even decades of caregiving that can be overwhelming and exhausting (though adjectives don’t even seem like enough!).  When someone dies there can be a sense of relief that is completely normal, but that can also create feelings of guilt.  Remember that feeling relief after an anticipated death does not mean you loved the person any less.  It is a normal reaction after a stressful and overwhelming time in your life.
  11. Don’t assume.  Just because your loss was an anticipated loss, do not assume this will either speed up or slow down your grief after the death.  We have said it before and we will say it again: we all grieve differently.

31. You grieve less when the person who died is older and “lived a long life”.

32. Your grief is easier when someone was suffering, because you are relieved they aren’t suffering anymore.

33. When someone dies by suicide it is their own fault or they were “selfish”.

34. When someone has a miscarriage, it was likely brought on by not taking care of themselves, stress, taking birth control, lifting something heavy, or some other ridiculous myth.

35. People don’t grieve after a miscarriage in the same way they grieve other deaths.

36. If something helped another grieving person, it will help you.

37. If something helped you while you were grieving, it will be helpful to most other people who are grieving.

38. Keeping a journal always helps.

39. Going to therapy or a support group is always helpful.

40. Art therapy always help, music therapy always help, etc.

41. You can get a prescription that will help your grief.

Nope, but wouldn’t that be nice if there was a magic pill to cure our grief?  Now, it is true that grief can exacerbate other underlying mental health conditions, like depression and anxiety.  Those are things that absolutely can be treated with medication.  It is important if you are struggling to see a professional.

42.  Once you get through all the “firsts” (first anniversary, birthday, holiday season) they will get easier and easier.

43. Grieving and mourning are the same thing.
These two words mean different in terms of defining them and they are as follows:

Grieving dictionary.com defines grieve as: verb (used without object), grieved, griev·ing.

to feel grief or great sorrow:She has grieved over his death for nearly three years.

verb (used with object), grieved, griev·ing.

to distress mentally; cause to feel grief or sorrow:It grieves me to see you so unhappy.Archaic. to oppress or wrong.

Mourning dictionary.com defines this as:

noun

  1. the act of a person who mourns; sorrowing or lamentation.
  2. the conventional manifestation of sorrow for a person’s death, especially by the wearing of black clothes or a black armband, the hanging of flags at half-mast, etc.
  3. the outward symbols of such sorrow, as black garments.
  4. the period or interval during which a person grieves or formally expresses grief, as by wearing black garments.

adjective

of, relating to, or used in mourning.

44. Just because someone looks okay when they are grieving it means they feel okay.

45. When you lose a spouse, if you haven’t started dating after _____ years it means you’re stuck.

46. After losing a spouse you need to start dating in order to “move on”.

47. After the death of a child, having another child lessens your grief.

48.  Being reminded that your loved one “wouldn’t want you to be sad” is helpful.

49. The best thing you can do is say something comforting, positive, or optimistic to a griever.

50. Grief is the same as sadness.

Don’t get me wrong, sadness is part of grief, but grief and sadness are not the same thing.  Grief is so much more than sadness, for so many reasons.

51. Grief is the same as depression.

Grief and depression share similar symptoms, but each is a distinct experience, and making the distinction is important for several reasons. With depression, getting a diagnosis and seeking treatment can be literally life-saving. At the same time, experiencing grief due to a significant loss is not only normal but can ultimately be very healing.

Clinical Perspectives

The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition(DSM-V) removed a “bereavement exclusion” from the diagnosis of major depressive disorder (MDD). In the DSM-IV, the “bereavement exclusion” stated that someone who was in the first few weeks after the death of a loved one should not be diagnosed with MDD. However, the DSM-V recognizes that while grief and MDD are distinct, they can also coexist, and grief can sometimes trigger a major depressive episode, just as other stressful experiences can.

Studies have shown that the extreme stress associated with grief can also trigger medical illnesses—such as heart disease, cancer, and the common cold—as well as psychiatric disorders like depression and anxiety.

Comparisons

Giving this overlap, there are times when it may be tricky to distinguish between grief and depression. A better understanding of their similarities and differences can help.

Similarities

Grief has several symptoms in common with the symptoms of major depressive disorder, including:

  • Intense sadness
  • Insomnia
  • Poor appetite
  • Weight loss

Grief can also develop into complicated grief, which, unlike uncomplicated grief, does not seem to dissipate with time and can look a lot like depression. Symptoms of complicated or chronic grief may include:

  • Intense sadness
  • Anger
  • Irritability
  • Difficulty accepting that whatever caused the grief really occurred
  • Excessive focus on the episode of grief or avoidance of it altogether

In extreme cases, someone with complicated grief may engage in self-destructive behaviors or even contemplate or attempt suicide. It is likely due to these symptoms that the DSM no longer includes the bereavement exclusion from the diagnosis of major depression.

Differences

Where grief and depression differ is that grief tends to decrease over time and occurs in waves that are triggered by thoughts or reminders of its cause. In other words, the person may feel relatively better while in certain situations, such as when friends and family are around to support them. But triggers, like a deceased loved one’s birthday or going to a wedding after having finalized a divorce, could cause the feelings to resurface more strongly. Depression, on the other hand, tends to be more persistent and pervasive. An exception to this would be atypical depression, in which positive events can bring about an improvement in mood. A person with atypical depression, however, tends to exhibit symptoms that are the opposite of those commonly experienced with grief, such as sleeping excessively, eating more, and gaining weight. Other clues that point to a major depressive disorder instead of grief include:

  • Feelings of guilt not related to what prompted the grief
  • Thoughts of suicide—although, in grief, there can be thoughts of “joining” the deceased
  • Morbid preoccupation with worthlessness (grief does not usually erode self-confidence)
  • Sluggishness or hesitant and confused speech
  • Prolonged and marked difficulty in carrying out the activities of day-to-day living
  • Hallucinations and delusions; however, some people experiencing grief may have the sensation of seeing or hearing things


The diathesis-stress model is a widely accepted psychological theory (remember, theories are just one way of looking at something) that attempts to explain why some people develop certain disorders such as post-traumatic stress disorder (PTSD), anxiety disorders, and major depression. This model is complex and nuanced and a full explanation is well beyond the scope of this article, but even a basic understanding helps us to conceptualize why someone might struggle after experiencing the death of a loved one in a way they’ve never struggled before.

Additionally, the diathesis-stress model helps to explain why some people develop disorders when others do not.  For example, it explains why 10 people could experience a traumatic situation where they are under the same stress, feel the same level of fear, and witness the same horrors; yet only two people go on to develop PTSD, 1 person develops depression and the other 7 people are, to varying degrees, able to cope with and integrate the experience.

Basically, the model asserts that some people have a genetic predisposition to develop disorders like depression, anxiety and PTSD.  Even though we all may  have some level of vulnerability to certain disorders, having this genetic trait makes you more vulnerable than others.  It does not guarantee that you will develop a disorder, but it puts you at risk especially when combined with other environmental influences.

By environmental influences, we mean factors such as early life experiences, social support, and exposure to other stressors.  Some environmental influences can have a protective effect, these are things such as having a strong social network of support, high self-esteem, and early life experiences that foster a sense of control, security, predictability, and the ability to cope with emotional pain.  Having a good amount of these experiences might safeguard someone with a genetic vulnerability from developing a psychological disorder.

On the other hand, some circumstances can have an opposite negative effect, such as having limited social support, low self-esteem, life experiences that create the sense that events are out of one’s control, unpredictable, and which foster avoidance.  Having one or more of these types of experiences might come together to create a second psychological vulnerability for developing psychological disorder (i.e. it makes things worse).

Despite having genetic and psychological vulnerabilities, a person still might not develop depression, anxiety or PTSD unless something happens to trigger it.  This is where the ‘stress’ in the diathesis-stress model comes in.  Stressors might include a whole slew of experiences, but most relevant to our conversation is – you guessed it – the death of a loved one or other significant loss.  This might explain why those who never had major depression, debilitating anxiety, or even substance use disorder before the death of a loved one might all of a sudden find themselves unable to get out of bed, obsessively worrying, panicking, or in the throws of addiction afterwards.

As I said earlier, sometimes it’s hard to see where grief ends and a true disorder begins. In fact, there is even a popular school of thought that says grief sometimes is a disorder in and of itself.   What the diathesis-stress model helps us to understand is that sometimes the events surrounding the death of a loved one could lead to both grief and psychological disorders such as PTSD, depression or anxiety disorders simultaneously.

It’s important to remember, grief can result in normal responses that feel completely foreign and distressing to the person who’s experiencing them.  What feels abnormal to you, may just be the result of the intense emotions and stress associated with the death of someone you love.  That being said if you’re experiencing emotions, behaviors, and thoughts which are distressing and limit your ability to engage in your daily function for a prolonged amount of time, it never hurts to talk to a mental health professional (again, preferably a licensed clinician with training in grief and bereavement).

52. Grief is a single emotion.

53. Once someone dies, you can no longer have a relationship with them.

54.  When someone dies you will always feel their presence if you are attuned to it.

55.  If you have faith in God it will lessen your grief.

56. Grief is, ultimately, always a transformative and positive experience that will eventually make you a better person.

Okay, this one is not me being a negative Nancy.  Sometimes grief really is positive and transformative and we can reflect on all the ways it has made us a better person.  That is a wonderful and amazing thing when it happens.    That said, not everyone finds or embraces transformation in grief.

57. You cannot grieve someone who is still alive.

58. People like faith leaders, teachers, doctors and counselors all have training in grief and understand what you’re going through.

Ahhh how we wish this were true.  Sadly, many professions listed above require NO formal training in grief!  None.  Zero. Zip.  Doctors?  Nope, not required. Counselors?  Unless they are specializing in grief, usually not required for them either.  Scary, we know!

59.  If you avoid grief and keep a stiff upper lip, it will eventually go away.

60.  If a widow or widower has photographs of their late husband or wife up around the house it means they aren’t ready to get involved in a new relationship.

61.  When kids are involved, it’s important to stay strong and focus all your attention on their grief.

62.  God never gives us more than we can handle

63.  After a death, you will always feel a rush of strong emotions.  

64.  Eventually you will stop noticing and/or being affected by grief triggers.

Alright, I did my best to shoehorn a lot of the common myths in this list, but we all know we missed some.  
Also: I did a video based on own thoughts about myths and misconceptions of grief and loss along with some pet peeves. I chosen only 5 get you all started and you can watch it here:

Time to debunk some of these myths and misconceptions along with the pet peeves! Are you ready?

Leave a comment below to keep the list going with your contributions! 


[Collab] Introducing Diamond from DiamondInTheRough (Spina Bifida)

Today, as a special guest to talk about her condition is Diamond from DiamondInTheRough which you can see her channel by visiting here: https://www.youtube.com/user/DiamondT…. I would like to thank her for coming onto my channel and that she will be talking more about her condition of Spina Bifida to us today. If you like this video, be sure to let me know if you’re interested in collabing with me to raise awareness and educate others about your condition. #collab #introducingdiamondintherough #spinabifida #spinabifidaawareness