MORE FOR MOEBIUS MOMS AND DADS: THE WORLD CUP--A TEACHABLE MOMENT?

I know some of you out there homeschool.  And others of you are in any case always looking for teachable moments for your kids.  The World Cup going on now could certainly be one of those.  But it could be argued that it hasn't always offered exactly the moments you'd expect.  Still, there is learning that can be done.  Read on:

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So I thought the World Cup, like the Olympics in February, could be a great teaching moment for my kids. We could talk about geography, sportsmanship and athleticism, all while cheering on the U.S. National Team.

Nothing but good, wholesome family fun, particularly for my 7-year-old, who is passionate about her futbol. It’s not often that her sport of choice gets this much attention in the United States, so I was ready to let her soak it up.

Um, can I get a do-over?

Mr. Ronaldo, you are a phenomenal athlete and a handsome man. But my daughter would call that picture “inappropriate.”

First, Portugal’s Cristiano Ronaldo, one of the best players in the world, shed his uniform to appear on the cover of Spanish Vogue with his lovely partner Irina Shayk.

So there’s that.

Then another soccer star, one not playing in the World Cup this year, was arrested for domestic violence assault. Hope Solo, a goalkeeper for the U.S. women’s National Team, pleaded not guilty to the charges related to an incident involving her nephew and half-sister Saturday morning in suburban Seattle.

This is the third time Suarez has apparently bitten an opponent during a game. That’s not a defensive strategy I would want to encourage in my Under-8 girls player.

Then, of course, Uruguayan star Luis Suarez was charged with biting Italian defender Giorgio Chiellini in a game Tuesday. Yes, I said biting. Because apparently Suarez missed that key lesson in toddler school about, you know, not biting people.

We took a break from our usual diet of  talking about not showing off or bragging, and letting your actions on the field speak for you to talk about Mr. Suarez. Those actions should never involve leaving teethmarks. A speech met with predictable eye-rolling from the tween set in the house.

The World Cup, and soccer stars, are becoming a teachable moment in a different way: How not to conduct yourself. I never dreamed I would be telling my elementary-school aged children not to emulate adults on the field who are biting people, but here we are. I’m pretty sure they had that down before their second birthdays, but we’re revisiting it, just in case.

Paging Julia Mancuso and Alex Bilodeau. Stat.

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FOR MOEBIUS MOMS AND DADS: THE BALANCE BETWEEN WORK AND FAMILY

So do you struggle sometimes, trying to find the right balance between giving everything to your kids...and being the best you can be at your job?  Do you worry that too much family time could somehow cost you your job?  Well, don't worry...you are not alone.  And that can be good to know.  And it can be good to know what causes these stresses.  Read on:

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Even in the 21st century, many people still struggle to find a balance between work and family life.

In fact, a new report finds working parents feel conflicted about their careers and personal lives, fearing they can’t be open with their employers about family obligations.

The report from Bright Horizons Family Solutions (BFAM), an employer benefit child-care and early education company, finds 48% of working parents fear family commitments and issues could mean they lose their job, while 39% say it may cost them a raise. Others (26%) worry their home life could lead to a demotion, and 19% say it could leave them excluded from meetings.

The company’s “Modern Family Index” was conducted by Kelton Global online among 1,005 Americans 18 and older, who work at least part-time and have at least one child under 18 in the home.

Bright Horizons CEO Dave Lissy says while the workplace has evolved over the past two decades to help create a more family-friend environment, workers still have a lot of anxiety.

“This stems from an employer that may not foster this culture,” he says. “A lot of this depends on the relationship a person has with a supervisor or manager. If a company doesn’t have great functions in place, and family obligations pop up and you can’t have that discussion with a supervisor, it all breaks down.”

Lissy joined President Barack Obama at this week’s White House Summit on Working Families, which focused on encouraging morefamily-friendly policies in the workplace.

Bright Horizons’ report finds working parents spent 51% of their time dealing with family responsibilities while taking paid vacations and that 35% would sacrifice a higher-paying job for reliable child care. In addition, 31% would sacrifice a raise, and 25% say they would forego a health benefit like vision or dental for dependable child care services.

Parents’ anxiety may be bolstered by the recent financial crisis, which has led to a much tighter job market. While May’s jobs report showed the economy has recouped the 8.7 million jobs lost during the recession, workers are still cautious over the labor market’s stability.  

“In a recession when the labor market is competitive, people are less open about talking about [family issues] because they are worried about their employment,” Lissy says. “But I think the reality is that for the economy to be productive as a whole, we need parents to make this work. The workforce needs men and women who will make this work.”

But striking a work-family balance isn’t just employers’ responsibility—but they play a role. Lissy says 49% of respondents say having a partner who shares in household duties helps bring equilibrium and 41% point to a supportive boss.

Workers’ aging parents are also making achieving a balanced life hard: 1 in 5 respondents expect to be caring for their parents in the next five to 10 years.  Known as the “sandwich generation” workers caring for their kids and parents are often juggling both group’s financial and time commitments.

Working dads foster as much anxiety as mothers, the survey shows. For example, 63% of dads say they are nervous to tell their boss about family commitments, compared to 68% of moms. Twenty-nine percent of working dads have faked sick to be more involved with their family, compared to 32% of moms.

As a working dad, Lissy says wasn’t too surprised by the results.

“These [family issues] have been misunderstood as only women’s issues, which they certainly are, but they are also men’s issues,” he says. “The modern dad cares just as much about being involved as working moms do. It can be harder for dads to be open and honest about this, given cultural norms around that issue.”

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BRAIN TALK: TIME TO GET YOUR BRAIN IN SHAPE

We with Moebius Syndrome are always interested in the way our brain works.  After all, having Moebius has to do with the 6th and 7th cranial nerve and that it's connection to the brain...doesn't quite work right.  But how does our brain work?  And how can we get it to work better?  These are always good things to know for those in our community.  So here's an interesting piece--that one thing you can do for your brain...is to exercise it more.  Read on:

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From the outside, the human brain might not be much to look at. What makes it fascinating is hidden within, in the complicated circuitry of neurons that makes you who you are.
Scientists are trying to understand this complex network and find the key to staying sharp as we age. In the meantime, use what they do know: that exercising these neurons can improve your memory and possibly stave off dementia.
In honor of Alzheimer's & Brain Awareness Month, spend some time getting to know your brain a little better.

The basic building blocks

Neurons, the functional building blocks of your brain, communicate using a combination of electrical and chemical signals. How and when do they fire? How are they wired together? How does that wiring change?

Understanding these fundamental mechanisms isn't just a trip back to biology class. This knowledge is essential to understanding how you can keep your brain healthy, and why these different strategies work.

The 86 billion neurons in your head are constantly active. Even though the brain doesn't account for much of your body weight, it uses 20% of your body's energy to function. It's a matter of gray and white.  Gray matter, which contains the parts of neurons that carry out thought processing, uses most of this energy. White matter is more efficient. It contains the long axons of neurons that relay signals and coordinate different areas of the brain.

However, it's not enough for your brain cells simply to fire in the same patterns over and over. From moment to moment, throughout your life, your neurons need to rewire themselves based on your genes and experiences.  The differences in the connections between neurons are what make each of our brains unique, but characterizing those differences is among the biggest challenges facing scientists today. Even if scientists could record the network of a whole brain in an instant, it would only capture a single frame of a lifelong movie.

Keep your brain strong

There are things you can do on a daily basis to help your brain stay sharp.  Most importantly, stay in good physical health. Exercising and eating a healthy diet may sound as trite as "an apple a day," but repeated studies have shown how these practices help the brain at a cellular level.

Exercise improves cognitive functions ranging from math to memory across the lifespan, and it can even benefit brain function during the early stages of Alzheimer's disease. Exercise enhances the growth and survival of new neurons in the hippocampus -- a region of the brain essential for long-term memory -- which may be able to replace others that degenerate as a result of the disease.

Blueberries, kale, coffee and nuts often get a lot of attention as good "brain foods" because of their high levels of antioxidants. Why?

Negatively charged oxygen compounds are produced as a byproduct of your body's normal metabolism. They can set off chemical chain reactions that eventually damage or kill cells. Because your neurons are so active, your brain is particularly susceptible, and antioxidants can prevent those chain reactions from occurring.

Give your brain an active lifestyle

You know you need to workout to keep your body in shape. Your mind is no different. Learning and practicing any challenging skill -- for example, a second language, reading, or even juggling -- can change the structure of your brain for the better.

This type of mental stimulation can delay cognitive decline associated with Alzheimer's disease, although there's evidence that once the symptoms of dementia begin, they progress faster.
Also, stay connected with friends and family -- as long as it doesn't create more stress! Several studies have shown that being part of a larger social network can reduce the cognitive effects of Alzheimer's disease.

Accept the things you cannot change

The fact that the brain is always changing gives us the opportunity to shape those neural connections through our behavior and environment. But beneath all of those factors lies the unchangeable role of genetics.

How do genes and your environment interact in normal aging, let alone result in diseases such as Alzheimer's? Neuroscientists are still looking at the effects of lifestyle choices, finding genes associated with elevated risk of disease, and studying the molecular mechanisms through which plaques and tangles of proteinsdamage neurons.

So far, however, the advances we are making are merely laying the groundwork for a future set of questions. We can only hope that someday, in a future June, we'll be celebrating a cure for Alzheimer's instead.

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AWARENESS WATCH: WORSHIPPERS SEARCHING FOR ACCEPTANCE?

Persons with Moebius Syndrome, and/or Moebius moms and dads:  I myself have never experienced this; and I can't remember anyone telling me that they had either.  But that does not mean it has not happened to us?  Have you ever had trouble in this area?  Read on:

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Lindsay Graham grew up in the same church attended by her parents and grandparents, and she expected the same would be true for her children. That changed when her son, J.D., was diagnosed with autism at age 2.

There were outbursts and tantrums, calls in the middle of the church service from the Sunday school teacher that J.D. was being disruptive. There were disapproving looks from other members of the congregation. Even if they didn’t say it, Graham knew what they were thinking: Can’t you keep your child under control?

“I felt very ostracized because he was always misbehaving. We just didn’t fit that perfect family mold,” said Graham, 33.

It was time to find another church, one equipped to handle children with disabilities. They ended up at First Baptist Orlando, which has a special needs ministry for children.

“At First Baptist, we found a place where we fit. I feel people don’t judge because you see a lot of kids with special needs,” Graham said.

Fifty million Americans have some form of disability and those numbers continue to grow as the population ages, the number of children with autism and attention deficit disorders grows, and soldiers return home from Iraq and Afghanistan with missing limbs and post-traumatic stress disorders.

But those numbers are not reflected in the pews, where accommodations for people with physical and mental disabilities are limited. A growing number of adults face the challenge of finding churches, synagogues, temples and mosques that are open and accepting of people with disabilities.

Martha Knowles, who has been deaf since the age of 7, said it is always difficult for people who are deaf to find a church that provides interpreters who can accurately translate the service through signing. And even when they do find such a church, sometimes they encounter resentment from members of the congregation.

“Some churches don’t feel comfortable having deaf people there,” said Knowles, 61.

That is starting to change, said Bill Gaventa, director of the Summer Institute on Theology and Disability. Acceptance of people with disabilities has grown during the past 15 years as both welcoming congregations and people with special needs find each other through the Internet.

“The Internet allows people to hear positive stories: That church is doing something, can’t we do something here?” Gaventa said.

But there are still obstacles. Some older churches are exempt from federal requirements to be handicap accessible, which creates problems for worshippers in wheelchairs.

“If you don’t have a restroom where someone in a wheelchair can go to the bathroom, how can you expect that person to attend?” said Ginny Thornburgh, director of the Interfaith Initiative with the American Association of People with Disabilities. “If we can’t go, we won’t come.”

But the bigger barrier isn’t architecture — it’s attitude, Thornburgh said. It’s not the stairs, it’s the stares. Too often, those with disabilities are regarded as people who are incomplete, broken, defective or inferior.

“Disability theology” is a response to that perspective. Based on Scripture, disability theology contends that those with special needs are also created by God and given attributes that are no less significant than any other person.

They don’t need fixing, they don’t need healing. What they need is a place in the pews, advocates contend.

“We are created by God and we are his handiwork,” said First Baptist Senior Pastor David Uth. “Our goal is to create a culture where everyone is valued and everyone is honored.”

Making church an accommodating place starts with the pulpit. “If the senior pastor is not on board and saying this church will be a welcoming and inclusive church, it will be very hard for something to be established,” said Linda Starnes, who helped start the special needs ministry at Northland, A Church Distributed in Longwood, Fla.

Senior Pastor Joel Hunter has made inclusion a priority at Northland, said Starnes, and the result is evident every Sunday: “Now you see people of all ages who are walking and rolling and strolling in with all different means of mobility and it’s a wonderful thing.”

Much of the change in acceptance has come from the parents of children with special needs, adults with disabilities and their advocates who have made access to church not just a matter of faith but also fairness.

“The key to me is a child or an adult has a right to be honored and valued in the house of God of their choice. It’s a justice issue,” Thornburgh said.

At First Baptist, the Special Friends Ministry has helped Lindsay Graham’s son, now 6, with his behavioral problems. The children have their own room during the church service, but aren’t segregated from the rest of the congregation, which allows everyone to become more comfortable with each other.

“We want them to get used to being in Big Church and we want Big Church to get used to them,” said Michael Woods, Special Friends director.

And that has made all the difference for Lindsay and J.D.

“He’s happy. We’re happy,” she said. “It has really changed our lives.”

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HEALTH UPDATE: FIVE WAYS YOUR PETS MAKE YOU HEALTHIER

Now this won't surprise most of those with Moebius Syndrome who read this.  People with Moebius Syndrome love their pets.  And they are fiercely loyal to them.  Why?  Well, think about it--your pets don't judge you.  They are always loyal.  And they don't care if you look "different"--not at all.  So we with Moebius love our pets.  And it turns out--pets can be good for you.  Read on:

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Happy Take Your Dog to Work Day! While you're showing Spot off to all your co-workers, make sure to tell them how happy -- and healthy -- he makes you. The benefits of having a pet extend well beyond companionship, and sometimes our furry friends don't receive the credit that's due.

shoulder to cry on, an alarm clock, an exercise partner, and a true member of the family. There is over 25 years' worth of research that shows living with pets provides a bounty of health benefits. These are just five:Health Minute: Pudgy PetsHealth MinutePudgy
1. You move moreWe live in an on-the-go society, which can leave little time for exercise and physical activity. But several studies have shown dog owners get more exercise than people who do not have a dog.Research funded by the National Institutes of Healthrevealed that more than 2,000 adults who owned and walked their dogs regularly were in better shape, and were less likely to be become obese, than those who did not walk a dog.
For bigger dogs with more energy, try rollerblading, biking or skateboarding to the get the blood pumping and the body moving.
2. Stress reduction & better self-esteem
One of the greatest benefits pets provide is a 24/7 emotional support system.
Pets innately know when we need them most, which gives us a feeling of belonging and a self-esteem boost. Pets are even being used to help our nation's servicemen overcome post-traumatic stress disorder.
One study in the American Journal of Cardiology found that pet owners had hearts that adapted better to stressful situations than non-pet owners. This is likely the rationale behind the annual Take Your Dog to Work Day.
3. A happy heart
Your heart loves your pet in more ways than one. Some of the largest and most well-designed studies in this field suggest that cats and dogs can help improve our heart health.The American Heart Association cites a number of studies that found pet ownership may help reduce the risk of cardiovascular disease. Some data even indicates that pets help lower cholesterol and triglyceride levels, and that owners with heart issues are more likely to survive heart attacks.Shaming: Capturing Fido in the act

4. Protection against allergiesStudies, like this one published in JAMA in 2002, have shown that being exposed to pet dander early on in life can help prevent future allergies. Specifically, children under the age of 1 who had two or more dogs or cats as family pets saw a reduction in allergy development by the time they were 6 or 
7.  Other studies have shown similar results, finding that early cat exposure reduced the development of allergies later in life.
5. Become a social butterfly
Taking your dog to the park or around the block for a walk may be benefiting you more than you're aware. Research indicates that walking with a dog leads to more conversations with neighbors, other dog owners, etc. and helps you stay socially connected.
A 2014 study in the journal Applied Developmental Science found that young adults with a strong attachment to cats and dogs also reported feeling more connected to their relationships and communities. And studies have shown those that have a more fulfilled and busy social life live longer, happier lives.

I-JUST-THOUGHT-THIS-WAS-INTERESTING DEPT: HOW TO STOP AN ANXIOUS THOUGHT IN ITS TRACKS

"When we're worried about something, "What if?" is the enemy. What if we mess up at work? What if we can't complete our goals? What if everything falls apart?"

Exactly.  So what can we do?  How do we combat this?  Here's some ideas:

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When we're worried about something, "What if?" is the enemy. What if we mess up at work? What if we can't complete our goals? What if everything falls apart?
Our default is to dwell on the potential of bad outcomes. As psychologist Rick Hanson explains in his book "Hardwiring Happiness: The New Brain Science of Contentment, Calm and Confidence," our brains have a natural negativity bias -- and before we know it, one troublesome thought can spiral out of control, leading to even more anxiety.
For those who deal with anxiety and anxiety disorders on a daily basis, it can be challenging to put an end to a fearful thought before it shifts into chronic stress. Fortunately, there are ways to train your brain to stop a worry-ridden thought in its tracks, says Peter Norton, a professor of psychology at the University of Houston. "The more you look for something or expect something to be there, the more likely you are to find evidence of it, so sometimes people can mislead themselves [when they're having an anxious thought]," Norton tells The Huffington Post. Our deep trust in our own thinking is what leads us astray -- but it's also what can help us get back on track, he explains.
Here are some expert tips for getting rid of an anxious thought, before it's able to spiral out of control:
1. Get in touch with how you're feeling.
The first step to eliminating an anxious thought is to recognize when you're feeling an emotional shift, Norton says. "Really allow changes in your emotions to be a guide to take a step back," he says. "Those changes in emotions are [the first] red flag."
That's because our thoughts have a way of deceiving our emotions -- in other words, we aren't able to separate logic from feelings in a worry spiral. "It's very common for people to not really be an astute observer of their own thoughts," Norton says. "Because we're so used to trusting our brains, it's very difficult for us to sometimes take that step back and think about our own thoughts and say, 'OK, I believe this is happening, let me reevaluate whether or not that's true.'"
2. Don't try to put it out of your mind.
It may sound like a paradox, but avoiding fearful thoughts actually makes anxiety worse, explains Dr. Mickey Trockel, M.D., a psychiatrist and clinical assistant professor of psychiatry and behavioral sciences at Stanford University. "The biggest concern is when anxiety starts to create an avoidance cycle," Trockel tells The Huffington Post. "When something is provoking those emotions, then avoiding it feels good -- and because that feels good, it's reinforcing the anxiety. Then, the next time the situation comes up, without any conscious decision-making, it creates greater intensity."
Norton suggests confronting your initial anxiety in a mindful manner to keep it from worsening. Otherwise, avoiding those worrisome thoughts may cause them to manifest in other ways, such as nightmares or flashbacks. "Challenge your own thoughts and diffuse them, rather than hide them underneath the rug," he says.
3. Ask yourself questions that put your fears in perspective.
This trick, which is used in cognitive behavioral therapy techniques for severe anxiety, allows you to step outside of how you're feeling and approach your thoughts in a logical way. "Evaluate the evidence for and against that thought," Norton advises. "Weighing the evidence back and forth will help you come to a more rational view of the situation."
Norton suggests mentally asking yourself questions in a way that reframes your fear. For example, "What do I feel is so dangerous or so bad about this current situation?" and "What do I think would be the worst outcome?" This prompts you to challenge those thoughts and move on from there. "This will help you learn to become a good observer of your own anxious thoughts," Norton says. "It allows you to take a step back from them [and] reevaluate the likelihood or the actual realities of the threat in order to try to come up with a less-biased interpretation of the situation."
4. Confront your fear in small ways.
Once you've managed to reframe your fear, Norton advises taking baby steps to overcome it. "Start with easier fears or easier situations first, then move up to more difficult ones as you become more successful in confronting your fears," Norton says. For example: If you get anxious during public speaking, practice in front of a friend or two first. Doing this will give you time to build up your resilience to the anxiety.
5. Practice mindfulness meditation.
To eliminate anxiety-driven thoughts before they take off, Norton advises employing relaxation practices to calm your mind and the rest of your body. "The body and the mind work in concert," Norton explains. "If one side is fired up, the other side is getting fired up. So by trying to relax or decrease your level of arousal, whether through meditation, relaxation exercises or deep breathing, you can typically start to bring the mental side of things down along with it."
Trockel suggests setting aside just five minutes to practice mindfulness meditation exercises. By spending those moments just focusing on your breathing, you can eliminate the temptation of letting your mind wander to the worst-possible scenario. "The goal isn't to breathe in a certain way, but rather to allow one's attention to focus on the sensation of breathing," he says. "Just five minutes of practice will make it easy to manage anxiety and allow you try it on the spot [when you start to experience those emotions]."
The practice also has long-term benefits if done regularly. Mindfulness meditation has been shown to change the brain in a positive way, help with weight-loss goals, lower blood pressure and even lead to better sleep.
6. Gradually build on your successes.
Once you're able to catch yourself ruminating on an anxious thought, Norton says it's all about practice until it becomes more second nature. "Try to short circuit that chain of thoughts and reevaluate the assumptions there," he explains. "Once you're comfortable with [what makes you fearful], move up to a more difficult situation. The great thing about confronting the fears is it also works well in concert with the thought challenging. It gives the person an opportunity to test out what really does happen in a situation ... and you can actually see what's more likely to come true."
Trockel says no matter how you address anxiety, the most important thing is recognizing when you're feeling stressed, and actively working to conquer it so it doesn't consume you. "If [anxiety is] left unchecked, it can zap your energy and make life less fun," he says. "Don't allow it to change what you really want to do."

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TEACHING CHILDREN THE ART OF SELF-ADVOCACY

This article is actually specifically about children with autism.  But really what it has to say is very much for our community too--for it is about children with differences...and when and how they should share information about their difference with others.  Moebius moms and dads, this is for you too; you're not going to live forever.  At some point you want to have an independent, self-reliant child who can stand up for him or herself.  How do you foster this? It can be a tricky question.  Here are some good ideas:

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We recently wrote about how parents of children with autism can talk to their children about their disability. Once the child has a label for her differences, though, there’s another important thing to talk to her about: When and how to share that information with others, and how to express her own needs.
When our children are young, one of our biggest jobs is to advocate for them. And for those with disabilities, that takes the form of fighting with health insurance companies to get the therapy he needs or working with the school system to make sure she is in a setting that works for her. We become warriors on behalf of our kids. As they get older, though, it’s important for them to take on some of that responsibility.
“I’m not going to always be here,” said Sharon Fuentes, a blogger in Northern Virginia and the mom of a boy with Asperger syndrome. “My main goal in life, for any child, is to raise an independent, responsible adult who is able to function in the world and be able to contribute to society. We all have to advocate for ourselves. The reality is that with special needs kids, if they were able to learn these skills just by watching, they would. But they can’t, so we have to teach them.”
So what steps should parents take? “First, the child needs to be aware,” said Fuentes, co-author of “The Don’t Freak Out Guide to Parenting Kids with Asperger’s.” ”You have to be aware of your own strengths, your own needs. You can’t advocate for yourself until you know what it is that you need.”
Once they’re armed with information about their specific challenges, they can advocate for themselves. But often, children with autism lack the ability to filter how much they share, and with whom. So in addition to teaching them how to speak up for themselves, it’s important to make sure they know there are times that they might want to keep information private, said Jim Ball, the executive chairman for the national board of the Autism Society.
“They are so trusting of people and so open and honest about who they are, which is one of qualities I love most about them, that they express it and tell everyone,” Ball said. “They are like that with other things, like sexuality, so you have to teach them that there is a time and place to discuss it. It’s the same with self-advocacy.”
Here are suggestions from Ball and Fuentes on teaching your child when and how to disclose a diagnosis, and how to express what she needs:

• Make sure they understand the difference between needs and preferences. Before she could teach her son, Jay (she uses an alias for him on her blog to protect his privacy, and we are using that name here) to go to teachers or administrators and ask for what he needed, Fuentes had to teach him that there is a difference between things he absolutely must have and things he would like to have. For Fuentes, that meant explaining to Jay, who is 13, that sitting close to the teacher in class is a preference, but having a quiet space to retreat and collect himself when he gets overwhelmed is a need.

• Have older children write a note to their teachers. Fuentes got a template from imdetermined.org before the school year started and had Jay use it to write a letter to each of his teachers. The letter outlined who he is, what he likes and dislikes, what stresses him out and what he needs to succeed. “It was not only a great self-awareness exercise for him, but it’s a great resource for teachers to have right away,” said Fuentes, adding that it can give teachers a quick summary of the student before they’ve had time to sit down and read an entire Individualized Education Plan (IEP). Jay handed the notes to the teachers himself before the school year started. “It was huge for teachers to see that,” said Fuentes. “It wasn’t just the mom saying this is what my son needs. Now all of a sudden it was the student coming to the teachers and telling them ‘This is what I need to be successful.’”

• Include the child in IEP meetings. Jay has begun sitting in for parts of his IEP meetings, and Fuentes said it has helped him understand how things work and why he gets certain services or accommodations, but not others. It also allows him to voice concerns about situations that may be problematic for him. He was worried about going to a built-in resource block next year that would be held in the auditorium, Fuentes said, because being in such a large room with a lot of other students would be stressful. So the IEP team was able to place him in a smaller classroom. Not every child has the language skills to verbalize their needs as well as Jay does, but Fuentes said even a simple yes and no, verbally, through gestures  or with an assistive communication device, and boost a child’s sense of self-esteem.

“Just asserting what they want is important for anyone to be able to have a sense of self-worth, and a sense of confidence that you can share what you want and people are listening to you,” Fuentes said.

• Talk about “safe people” when it comes to sharing information. The child needs to know who she can go to if she’s having a problem. Talk to her about when to share her needs or disclose her diagnosis, Fuentes said. Otherwise they might start telling other students, unnecessarily, and bullies could use the information against them. “It’s a very fine line,” Fuentes said. “I don’t ever want him to feel bad about it. This is part of who he is. But I don’t walk around letting everyone know what my religion or sexual preference is. It’s the same thing. We’re trying to teach him the parameters.”

• Turn to a book. Ball likes “Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum,” edited by Stephen Shore. Ball said it’s great for helping people get a grip on when to tell people about their diagnosis, and when to keep the information private. The book has contributions from adults who have autism, including a preface by autism activist, Temple Grandin. It uses a system of rules to teach people how to determine what information to share, and when.