5 Things I Don’t Want to Hear as a Parent of a Child on the Autism Spectrum

Unwarranted parenting advice — it’s likely we’ve all given it and we’ve all gotten it. Some comments are worse than others, but as a parent of a child with autism, some seem especially ridiculous.

Here’s what I’ve encountered:

Image result for rare disease

1. You need to spank that kid. Don’t let her act like that.

OK, so no one has said this out loud to my face, but I suspect they wanted to. I could see the judgment written all over their faces. I already feel like a failure, thank you very much, I don’t need your help. But seriously, just no. Spanking my kid will not fix whatever behavior you don’t like. That behavior comes from a lack of ability to communicate. You might act the same way if you had no words.

2. She’ll eat it if she’s hungry enough.

Ha! That seems funny to me and also, no. She’ll go to the hospital before putting that chicken in her mouth. It isn’t simply an issue of being “spoiled” but rather something more complicated. GI issues, allergies and intolerances, texture aversions, panic at changes and unfamiliarity, etc. Take it from me, for some of our kids, food can be an issue.

3. Just get a babysitter; she’ll be fine.

There is no “just” about this situation. This babysitter would have to undergo more hours of training than someone working for the CIA. I’m exaggerating, of course, but training is necessary. Some of our children require a delicate hand and the specifics of caring for my child aren’t something that could be covered in a quick 15 minute chat. The logistics of managing pre-meltdown behavior is tricky, to say the least, and not something I’m willing to entrust to “just” anyone.

4. She doesn’t need to watch so much TV.

Here’s the deal, TV serves two purposes in our house: decompression and education. We all have our ways of unwinding after a hard day. For my kid, this is TV. In the early days when she didn’t have any words of her own, she did have echolalia. Movie lines became her language. So, yes, I’ll continue to let her watch TV, and it will probably be more than “they” recommend.

5. She’s fine, you don’t need to leave.

Yes, she does appear to be fine right now. She’s having a blast running around with her friends. But you don’t see what I see. I see the redness in her face, the wideness of her eyes, the forgotten personal space. You don’t hear what I hear. I hear the “too loud” tone of her voice, the quiver in her laugh, the “too fast” string of words she just spoke. But most of all, you’re not around for after. After the excitement has worn off, the exhaustion sets in. With it comes loss of language, irritability, and emotional imbalance. Sometimes this can last for hours. Other times days. I know she looks fine, but trust me when I say she isn’t.1



11 Things Siblings of Individuals With Down Syndrome Wish You Knew

There are many misconceptions floating around about Down syndrome, people with Down syndrome and their families. In my experience, the idea that having a sibling with Down syndrome is nothing but burdensome or unfair is one of these huge misconceptions. Just as every individual is unique with or without Down syndrome, every family dynamic is unique. My story might not be in line with every sibling to a person with Down syndrome, but I believe many of us having more than a few of these qualities in common.

Image result for down syndrome

1. We are understanding.

In 2011, Dr. Brian Skotko found in study conducted at Children’s Hospital Boston, “among siblings ages 12 and older, 97 percent expressed feelings of pride about their brother or sister with Down syndrome and 88 percent were convinced they were better people because of their sibling with Down syndrome.” While my situation is different — I’m 15 years older than my brother and now an adult living away from home — learning to become a good sister to John and good daughter to my parents facing their newborn’s Down syndrome-associated heart defect in the midst of my temperamental teenage years helped me to become a better, more compassionate and accepting person. I hear parents and expectant parents of children with Down syndrome worry that their other children will somehow be scarred by the redirection of their focus to their child with developmental differences. Again, the emotional needs of a 15-year-old are different than those of a younger child; but, personally, I would rather feel valued for being a compassionate and caring person and helper than given undivided attention and exclusive use of my parents’ time and resources. My parents did a good job expressing their appreciation for the help and empathy my sister and I contributed.

2. We Don’t Have It All Together

Just because we tend to feel more accepting and have a lot of practice in patience doesn’t mean our family is any less crazy than yours. Additionally, though we may have learned different communication techniques to interact with our sibling based on his or her unique needs, we still drive each other up the wall sometimes. My parents like to joke that sometimes you wouldn’t know my sister and brother are 12 years apart; they annoy each other like they’re much closer in age. My sister loves to tap my brother’s iPad games over his shoulder, and he loves to break into her room and jump on her bed. We’re just like any other family, and we have the same kind of relationship with our sibling with Down syndrome that we do with our typical siblings.

3. We Have Strong Families

Maybe this is specific to my family, but from what I’ve observed, it seems common in the Down syndrome community. Part of it could be our desire to ban together to provide the best support for our loved one with Down syndrome as we tackle unique challenges together. My brother has helped our family to form a stronger bond, a sense of community and belief that we’re all in this together. We do everything in our power to support and protect each other, whether it be from outside negativity, inner self doubt or a system that just isn’t doing enough to provide resources that our family needs. I also feel particularly fortunate to have a brother who expresses happiness so freely. When John is happy, which is often, he will tell you, he will jump and laugh and insist, rather stubbornly sometimes, that you laugh along with him. This determined purpose to support one another combined with the continual happiness check-ins from my brother has helped our family develop a culture of joy.

4. We Worry About Our Loved Ones

When John was born, he was diagnosed with Atrioventricular Valve Defect (AVS), a serious heart condition which required surgery, and by the time he was 6 months old, he’d undergone two serious heart surgeries — one to reconstruct his heart to function properly and the second time to install a pacemaker after he went into cardiac block. He’s now doing fantastic and doesn’t even need to use his pacemaker, but these memories stay with us. Life-threatening medical complications can happen to anyone, and when something like this does hit that close to home, it’s nearly impossible not to be changed and have a stronger appreciation for how little control we have over our lives and those around us. I worry especially because certain diseases like leukemia and Alzheimer’s pose a greater than average risk to people with Down syndrome, and I can’t bear to think of my brother so fragile again. I also worry about my parents because of how much my brother needs them. I need them, but if anything were to happen to them, John would be my responsibility. I would gladly take care of him, but I just can’t imagine how difficult it would be for all of us emotionally. How could I possibly explain something like that to him? I also worry about everyone’s mental and emotional health. There’s a lot of stress involved with raising a child with special needs in a society that doesn’t accept them fully. I know we all love this journey in our family, but it can also take its toll on my parents when there are so many questions yet to be answered and so many resources we still have yet to find. Then there’s bullying. I pray from the bottom of my heart that my brother never has to face bullies, but I know that it’s realistically an issue for any kid, especially one seen as different. We have so far to go.

5. We Want You to Know About Us

I never hide my brother’s story or my family’s story. It’s important to me and an integral part of who I am, and I want people to know that about me. I want people to be aware of my brother and the challenges he faces and the abilities he has so our society will change its attitude towards people with Down syndrome or other intellectual and developmental disabilities. I want people with typical children to make an effort to teach their kids about children and adults with special needs. We want awareness so we can break down the irrational and unfounded fear of the unknown associated with disabilities.

6. We Need Community and Crave Inclusion

I love attending events within the special needs community. From Miracle League games to the Buddy Walk, it’s wonderful to be immersed in a community full of people who all seem to understand each other and have an appreciation for the differences that make our loved ones so unique and special. We also want our families to be accepted and appreciated in the community at large. We want to be treated like anybody else. It can be frustrating when people make comments or facial expressions that express pity towards us. My brother is awesome, and we’re probably having a great time when you see us at the park; feel free to say hi. You don’t need to feel sorry for us; if there’s anything to feel sorry for, it’s the other-ing and minimizing of a part of the population we should be proud of. Our differences make us better. We learn from differences. We should be happy and proud to include people with all kinds of differences into our community and society at large.

7. We Can’t Possibly Fathom How So Many People Don’t Get It

“Down Syndrome is the least funded major genetic condition by our National Institutes of Health (NIH) despite being the most frequent chromosomal disorder (1 in ever 691 babies in the US is born with Down syndrome),” according to  Just months ago Richard Dawkins caused an uproar when he tweeted about his belief that it’s immoral for a woman to knowingly give birth to a baby with Down syndrome. Some doctors are still suggesting expectant mothers terminate pregnancies when the infant is suspected to have Down syndrome, and some are still implying to expectant and new parents of babies with Down syndrome that their child will never be able to interact with them, walk or think for themselves. We just can’t understand how people can be so ignorant. We need to wake up.

8. We’re More Alike Than Different

My brother has Down syndrome, but it doesn’t define him. He’s a smart, mischievous, tech-savvy, funny, sweet, wild yet sensitive 8-year-old boy who loves music, dinosaurs, his iPad, his teacher and his family. He has a strong will and sense of determination. He’s a lot like any other 8-year-old little boy. It’s time to stop looking at people with developmental disabilities as less than. Everyone is unique and our differences should be embraced and celebrated. People with Down syndrome are just like you. They want to be loved, included and valued; they want to live meaningful, happy lives just like everyone else, and they’re absolutely capable of achieving these things

9. We’re Reminded of What’s Important in Life Every Day

My brother has the unique ability to cause the people around him to reevaluate their priorities. We can get so caught up in the rat race of life, and John reminds us that it’s our loved ones who are most important, and we need to slow down and make the time to be with them and laugh with them. I’m serious — sometimes John is unrelenting about insisting you laugh with him. He knows laughter can turn your day around and make you happier even if it’s not genuine at first. John knows a lot of things that people don’t always give him credit for, and we’re reminded of what’s important when we take the time to learn from him. People, our relationships, love — these are the important things in life. Everybody just wants a purpose in life, to mean something.

10. We Love Our Siblings Just the Way They Are

John is an incredible, unique, joyful little boy. I love him exactly the way God made him. I want him to grow and learn and have every opportunity in life, but I don’t wish he was anyone other than John. He is awesome, and I love him no matter what.



Keto Bread-1G Net Carb Per Slice

If you’ve been looking for what is definitively the best keto bread recipe on the internet, then you’ve come to the right place. How do I know it’s the best? Well, I’ve tried just about every keto bread recipe there is over the past few months and decided that nothing was good enough. There’s a couple that are good, but I wanted perfection! The best part about this recipe is that it’s simple, and once you have it down you can replicate this any time you want. I’ve been making a loaf every sunday for the past few weeks and would recommend that to anyone. It’s so nice to have a loaf of bread at your disposal when you’re on a low carb diet. It almost feels like cheating. Check out this recipe and start making the best keto bread you’ve ever tried today!

The Secret Step

The secret step in this recipe that takes this bread from good to great is the separation of the eggs. You’re going to want to separate the yolks and the whites. The reason for this is that we’re going to whip the egg whites until they are fluffy. We’re looking for soft peaks. This will add some volume to the otherwise dense bread. Beating the egg whites is the answer to the denseness that comes with using almond flour. I’ve made countless baked goods using almond flour and the main problem I’ve encountered is how dense the finished product is. The fluffy egg whites in unison with the high dosage of baking powder do a good job of getting this loaf nice and fluffy and adding some air pockets into the loaf. This makes for a better tasting bread.


best keto bread loaf sliced straight on

What makes this the best keto bread recipe you’re likely to find is the fact that you can use it the same way you use actual bread. Sounds crazy right? If you search for keto bread on pinterest, or the internet you’ll find a different recipe for everything you might want to make. Want to make french toast? sandwiches? croutons? avocado toast? You can do it all with this bread recipe. You can even get crazy and throw this bread in a food processor and use it as italian bread crumbs. The possibilities are endless.


best keto bread avocado toast


The Best Part About This Bread?

The best part about this bread is that it makes it so much easier to eat a low carb diet. Yes, there are some savage beasts(joking) that don’t miss bread at all and are happy to just eat bacon 7 times a day, but if you’re anything like me, bread was a staple of your diet growing up and you still have a look of yearning in your eyes when they drop that bread basket in the middle of the table at family dinner. I feel your pain. This bread your shoulder to cry on.


best keto bread sliced and toasted


Keto Meal Prep!

If this bread recipe interests you, then you might also like this meal prep video Megha and I made. We show you what an average weekly meal prep looks like for us. This isn’t the crazy bodybuilder meal prep where we put everything in individual portioned Tupperware. We just show you how we prepare a few keto staples(including the best keto bread!) at the start of each week. We find this helps us immensly and if you haven’t tried it yet we would definitely recommend you give it a try.


As always, if you try any of our recipes or have questions, please leave us a comment or send us an email. Be sure to check back regularly as we put out 2-3 awesome keto recipes a week. Thanks!
The Best Keto Bread on the internet. This recipe has been tested and perfected.


Calories: 90
Fat: 8g
Protein: 4g
Carbs: 2.25g
Fiber: 0.9g
Net Carbs: 1.35g



My son with Down syndrome is everything I never knew I wanted.

CNN PRODUCER NOTE     When Sabrina Moyer was pregnant with her son Colton, the last thing she considered was that her son would have special needs, let alone Down Syndrome. After he was born, Moyer came across a flood of unsympathetic statistics about children with Down Syndrome, but also very little information about the positives of raising a child with the genetic disorder.

Image result for viral photos of down syndrome child

For weeks she was in a state of mourning, she kept asking herself, “why me?” But after weeks of torturing herself over the news, she realized she was asking the wrong questions. “I should have been asking, ‘Why not me?’” she said. So she made a resolution to be her son’s biggest advocate, and started a Facebook group called Special Miracles to share the positive and inspiring testimonies of raising a children with special needs.

Colton, who is turning 2 years old in September, is an irreplaceable part of the family. “My family and I went through a tumultuous time, but we have banded together and overcome the pitfalls that life has brought us. Today, Colton is a happy, healthy child,” she said.

He and his older brother Remi, who is 7 years old, have an especially close relationship. One that she did not expect. “Sometimes I still think of the future and wonder how Remi will handle things when we go, but his devotion to his little brother is so great that I think these are thoughts of my losing control of the situation after I am gone rather than any real fear or worry,” she explained.

She expects great things from both her boys as they grow older. “Colton’s future is just as dazzling, and I have come to the understanding that it is not if he will achieve milestones, it is merely a question of when,” she said.
– Jareen, CNN iReport producer

Colton was born on September 12, 2012.

He was a big baby. But I already knew that.

He had a full head of hair, and after months of heartburn, I knew that too.

He also had Down syndrome and that, I did not know.

Over the course of Colton’s life thus far, I have learned so many things. I have met; I have inspired; I have been inspired; I have cried; I have been mad; and I have cherished, with everything that I possess in me, my son, who has Down syndrome.

When we first started this journey together, there was nothing that could have prepared me for the heartache, the fear, or the suffering that would take hold of me when the doctor first spoke those words. And neither could the speaking of those words ever prepare me for the beauty, the joy, or the overwhelming love that I feel for my child.

The first things I think about when I wake up in the morning are my sons, and the last things that wonder across my thoughts as I am drifting off to sleep at night are my sons. They are the light of the universe to me, though they are as night and day to one another.

It was only after reflection however, that I was able to overcome the pain that Colton’s diagnosis brought to me and to my family. I had to fight to regain control of everything that I thought mattered most importantly in life.

It felt as if I had simply been struck down, flattened by some impossibly large tide that swept me far, far away from the place I thought I belonged to. But I was wrong.

Once I climbed out of that maelstrom, I found myself standing in stranger waters. But there was something different there. The light was just a little bit softer, the sounds a little bit louder. But the imagery, the landscape was constantly changing.

In one moment everything was clarity and sunshine, and in others it was hail and furious storm clouds.

I spent weeks shouting myself hoarse, screaming, pleading, begging with…the air maybe, to come and rescue me. I hid from the colors and I hid from the powerful landscape that was all around me because it was so fierce in comparison with where I had come from.

But eventually I had to stop hiding, I had to come out or I would have sat in the dark forever, never understanding or fully realizing what had just happened to me.

So I stepped out, and I faced the storm.

I clambered out of that dark pit and I brought myself up to face whatever dark and terrible thing was going to ruin my life for good here, in this strange place.

But nothing ever came.

No terrible monster ever shot out of the dark, no big bad beast ever showed its face. There was nothing in the dark places, nothing at all, but me. I was putting myself there, and if I wanted to be free of them, I just had to walk away.

So I did.

I realized that there would be stormy days with my son, as there would be stormy days with his brother. I also had to force myself to realize that there will be just as many sunny days, and I cannot abide by slinking about, saddening myself over an idea that has passed me by.
Particularly when the one that stuck was so much better.

I will raise my son to the best of my ability, with my entire family at my back. Together, we will give Colton everything that he will ever need in life, and in return, we will get his smiling face, his big brown eyes, and his love and affection.

Is this not what every parent expects of their children?

Remi will have the same opportunities, the same love and devotion, the same wonderful memories, and some of them will be exclusively between the two of them.

I could not have asked for a better family, we fit like pieces to a puzzle. There are some days when I look at my sons, either of them, and ask myself how I got along without them in my life. It’s stunning to think that Remi is already in school, and Colton is already nearing two years old!

My heart feels as if it were about to burst sometimes, picturing the road we have taken, and imagining the journey yet to come. I know that one day soon these moments will just be memories, and I will find myself astonished, horrified, breathless and out of words as I realize that my boys are grown up. Then I have to laugh, because this means that one day I will be saddened at the loss of these days.

How ironic that I will soon covet the memories that we made here when not so long ago I was a hopelessly emotional wreck, sobbing my fears and sadness that my youngest was just a little bit different.

With time comes wisdom, I suppose.

I have taken such a winding journey that I wonder if everyone does this, or if I happened to take the scenic route. So many ups and downs and confusing states of mind that I cannot count them all, but as I look back over them, I realize they were all leading to one place.

I was always going to be okay.

When I gave birth to Colton all I could think about, over and over, was how his life was going to turn out. How my life was going to be. Everything seemed so terrible, dark and ugly. I could not wrap my mind around the situation; much less fathom a happy story for us.

I understand now that it was only the shock talking.

Almost two years later I am the happiest I have ever been in my life, and my sons are entirely to thank for that. My husband has stood at my side and we have grown closer and stronger than ever before because of the fear we faced together.

Is this not what we strive for in life?

I am today a much stronger, wiser, educated individual, and I would never have made it this far without the shove that Colton’s birth gave me. I would never have dreamed of creating a platform like Special Miracles, not in a million years.

But now that I have, I am saddened to think that if Colton had been born as anybody else, I would never have done it. I would never have met all of the wonderful people that have become a part of my life, or made some of the friendships that only happened because I was thrown into that circle of people by his diagnosis.

It would be like losing a limb.

How has this never been a part of my plan to begin with?

Life, certainly takes some strange and unexplainable twists, but where you wind up is half the surprise, I suppose. It has been a magnificent journey for me thus far. It doesn’t make a lot of sense. How could something that started out so terrifying become this, which is so delightful that I simply do not have the words to describe it? I don’t have an answer for that, but I do have some words for any other parent who is going to go through it, or is in the process of going through it now.

That feverish, crushing despair will end. You will be happy again. Your child will light up your world, even if it takes time for you to see it.

Some events in life far outstrip the others when it comes to how deeply they affect us, and Down syndrome is high on that list, but it doesn’t bring the world to a stop.

Take it as a new direction, a fork in the road where you have a choice. You can be defeated, or you can defeat it. However you do that is entirely up to you, but there’s a reason that medical advances, medications, and laws pertaining to Down syndrome and other conditions like it are improving. More and more parents are choosing to fight, and along the way they are making strides in overcoming the stigmas and setbacks associated with raising a child with special needs.

The diagnosis does not define your child, they will define what it means to have Down syndrome as they grow.

And when the day comes where you wake up and realize that it just doesn’t matter as much as you thought it would, walk with your head high because you’ve done something many people claim they could never do themselves.

You’ve beaten the most frightening monster of all.

Your own fears.


My Son Has a Kind of Autism No One Talks About This


Like most parents of children with autism, I have been reading about the family in California who is being sued by several families in their neighborhood. The lawsuitcontends that their child is a public nuisance because of his behaviors that his parents failed to fix.

One of the plaintiffs in this case stated “This is not about autism. This is about public safety.”

But he is wrong. This is absolutely about autism. It’s just not about the autism people hear about.

The media shows us all of the feel-good stories, like the child with autism who gets to be the manager of the high school basketball team, or the boy with autism who goes to the prom with the beautiful girl, or the girl with autism who is voted onto the homecoming court. We light it up blue every April and pat ourselves on the back for being so aware.

But we aren’t aware.

Because for every boy with autism who manages his high school basketball team, there are 20 boys with autism who smear feces. And for every girl with autism who gets to be on the homecoming court, there are 30 girls with autism who pull out their hair and bite their arms until they bleed. And for every boy with autism who gets to go the prom, there are 50 boys with autism who hit and kick and bite and hurt other people.

This is the autism that no one talks about. This is the autism that no one wants to see.

We aren’t aware.

One of the plaintiffs said “We’re not upset about him being autistic. We are concerned and upset about his violence (toward) our children.”

There is no way to be upset by this child’s behaviors and not be upset about autism.

Autism and behaviors go hand-in-hand. Why? The behaviors are communication. Individuals with autism often can’t communicate in a way that typically functioning people can understand. So they do things to get their needs met. And often the things they do are scary and violent.

My Son Has the Kind of Autism No One Talks About — Part 2

We aren’t aware.

My son, who is the same age as the child in this story, was extremely aggressive when he was younger. He did all of the things that the child involved in this lawsuit did. My son ran after other children on the playground just to push them down. He hit. He kicked. He bit. He pulled hair. And I never knew what was coming. For the longest time, I would flinch when he ran up to me…I didn’t know whether he was going to hug me or hit me. Can you imagine, as a mom, what that’s like? To flinch when your child runs to you?

We aren’t aware.

Because I didn’t know what my son was going to do to other children, we stopped going to the park. We stopped going to the Mommy and Me class at the library. We started going to the grocery store at 6:00 a.m. when most people weren’t around. He didn’t go to daycare but had a sitter at home so he wouldn’t be around other kids in a daycare setting. I essentially isolated him in order to keep other people safe. Can you imagine what it’s like to be a mom and not be able to take your child to the park? Or have your child attend birthday parties? Or have play dates?

We aren’t aware.

Because of my need to isolate my son, I also isolated myself too. I watched from my window as other moms in the neighborhood sat in their camp chairs and chatted while their children played. I couldn’t join them because my son couldn’t be around the other kids. Once a mom asked if my son could come to their house and play with her son. Can you imagine what it was like to feel so excited and then feel so ashamed when, after explaining my son’s issues to her so she would be aware, that invitation was rescinded?

We aren’t aware. Not at all.

But we can be. We can open our eyes and understand that autism isn’t all about the high functioning child who is “quirky” but OK to be around. Autism isn’t all about the six-year-old who can play Piano Man better than Billy Joel. Autism can be hard. Autism can be sad. Autism can be messy. Autism can be violent. Autism can be isolating.

My Son Has the Kind of Autism No One Talks About — Part 2

Once we become really aware, lawsuits like this won’t happen. Why? Because instead of putting blue lights on our front porches, we will go outside with our kids and we will help them play together…typically functioning kids and kids with autism. We will get to know our neighbors and we will embrace the children with behaviors and embrace their parents along with them.

We will learn what things trigger our child’s classmate who has autism so that we can help the children interact while avoiding things that will cause aggression. We will be a true village, including those who can model appropriate behaviors and those who are trying so hard to learn them. We will work on teaching our children not to hit and how to avoid being hit.

The parents involved in this lawsuit, on both sides, need to do more. More education, more understanding, more inclusion and more involvement.

Now tell me, is autism the real public nuisance?

We can become aware … if we really want to.









Deconstructing Oppositional Defiant Disorder A Child Heartbreaking Story

By the time Stuart hit second grade, his teachers had pegged him as a “problem child.” They knew he came from a loving home and could discern right from wrong, but still, he frequently started fights and caused classroom outbursts. By tenth grade, he had been in and out of various therapies and special schools. His primary diagnosis: oppositional defiant disorder, or ODD.


Was the diagnosis accurate, or useful?

Many parents have contacted me since my post questioning whether ODD is a valid diagnosis. I described it from a neuroscience perspective as an indicator of a child’s threat-detection system gone awry. This new perspective views persistent oppositional defiance as a child’s pattern of behaving defensively, even when the child isn’t actually facing a threat. The cause, according to the preeminent neuroscientist Dr. Stephen Porges: challenges in a child’s neuroception, the subconscious capacity to detect safety and threat.

I’m not alone in questioning diagnoses such as ODD. The National Institutes of Health (NIMH) has made it clear that diagnostic categories are not useful treatments guides, as they were long perceived. In 2013 the NIMH stopped funding research based on the diagnostic categories of the DSM, the “bible” of mental health. Why? Because research showed that it’s more important to identify underlying causes than merely to check off symptoms on a list.

So, we need to take a closer look at and deconstruct ODD.

We also need to abandon old models treating a child with an ODD diagnosis as needing to work on simply becoming more compliant—essentially, blaming the child. Too often, we assume that what a child or teen needs is better behavioral management, more consistent parenting, or better medication. But current neuroscience shows otherwise: the behaviors we label in ODD are actually ways of responding to stress. They indicate a pattern of underlying emotional dysregulation that regularly sends the child into a fight/flight response.

The concept of neuroception has the potential to enlighten clinical thinking when developing treatment plans for children and teens. It turns traditional thinking on its head: ODD is not a “thing” to be cured, but an indicator that the child is experiencing severe and often unpredictable stress responses. To help children exhibiting these responses, we need to offer supports to help children (and caregivers) feel safe, and not blamed.

If you are a parent, you may have been given messages simplifying ODD such as:

—Inconsistent parenting or discipline is causing your child’s behaviors.

—The “disorder” is causing the behaviors.

—You should clamp down and create more rules and structure so your child understands that these behaviors will not get positive reinforcement.

We need to shift that thinking with these counterpoints:

— Many children from a wide variety of backgrounds are diagnosed with ODD. Of course, neglectful or abusive relationships cause mental health insults, leading to a wary threat-detection system and, in turn, oppositional or defiant behaviors as a response to trauma. But many children from stable families are also diagnosed with ODD. When we look closely at these children, we often see in the child’s early history an emotional vulnerability and tendency towards fight-or-flight reactions to a wide range of triggers, including seemingly innocuous ones.

Don’t blame the disorder. As Dr. Porges explains, fight or flight behaviors are the result of the subconscious threat detection system (neuroception) falsely sensing danger. This conceptualization involves underlying brain feedback systems, rather than thinking of ODD as a specific disorder with a specific cause.

Discipline isn’t always the answer. The way to help children feel safe is not more rules and punishments—which make the child feel blamed—but rather personal attunement to helping the child manage these intense stress responses. We need to become investigators as to the range of individual differences that contribute to children’s emotional vulnerability, and help them construct new meanings from the sensations they experience leading to the challenging behaviors. Also, our most vulnerable children—including foster children, and those in the child-welfare system—who have experienced early trauma may be re-traumatized by behavioral approaches that make them feel alone and relationally unsafe.

Seek the right professional. Find a therapist who understands that oppositional behavior is an indicator of chronic stress responses. Be wary of those who urge “behavior management” in isolation from supportive and loving relationships. Avoid treatments that focus solely on observable behaviors separate from what is causing the emotions. (School teams may not be aware of or fully understand as this is a relatively new approach, but that doesn’t mean you shouldn’t advocate for what’s right for your child.)

As for professionals, I encourage us to reflect on the messages we send parents and children about persistent oppositional defiance. When we insist that a child can overcome these challenges “if only she puts her mind to it,” the message takes a heavy toll on the child and on her relationships.

And what about Stuart, who struggled so much as a child? His devoted parents eventually placed him in a supportive day treatment program. There, he came to understand something that had been his constant companion since infancy: a persistent and unrelenting fight-or-flight response that would virtually take over his body from time to time. With that new perspective on himself, he was able to begin to rebuild emotionally, and move forward with his life.


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10 Things Every Child With Autism Wishes You Knew

Some days it seems the only predictable thing about it is the unpredictability. The only consistent attribute–the inconsistency. Autism can be baffling, even to those who spend their lives around it. The child who lives with autism may look “normal” but his behavior can be perplexing and downright difficult. Autism was once labeled an “incurable disorder,” but that notion has crumbled in the face knowledge and understanding that increase even as you read this. Every day, individuals with autism show us that they can overcome, compensate for and otherwise manage many of autism’s most challenging characteristics. Equipping those around our children with simple understanding of autism’s basic elements has a tremendous impact on their ability to journey towards productive, independent adulthood. Autism is a complex disorder but for purposes of this article, we can distill its myriad characteristics into four fundamental areas: sensory processing challenges, speech/language delays and impairments, the elusive social interaction skills and whole child/ self-esteem issues. And though these four elements may be common to many children, keep front-ofmind the fact that autism is a spectrum disorder: no two (or ten or twenty) children with autism will be completely alike. Every child will be at a different point on the spectrum. And, just as importantly, every parent, teacher and caregiver will be at a different point on the spectrum. Child or adult, each will have a unique set of needs.

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Here are ten things every child with autism wishes you knew:

1. I am a child. My autism is part of who I am, not all of who I am. Are you just one thing, or are you a person with thoughts, feelings, preferences, ideas, talents, and dreams? Are you fat (overweight), myopic (wear glasses) or klutzy (uncoordinated)? Those may be things that I see first when I meet you, but you’re more than just that, aren’t you? As an adult, you have control over how you define yourself. If you want to single out one characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. If you think of me as just one thing, you run the danger of setting up an expectation that may be too low. And if I get a sense that you don’t think I “can do it,” my natural response will be, why try?

2. My senses are out of sync. This means that ordinary sights, sounds, smells, tastes, and touches that you may not even notice can be downright painful for me. My environment often feels hostile. I may appear withdrawn or belligerent or mean to you, but I’m just trying to defend myself. Here’s why a simple trip to the grocery store may be agonizing for me. My hearing may be hyperacute. Dozens of people jabber at once. The loudspeaker booms today’s special. Music blares from the sound system. Registers beep and cough, a coffee grinder chugs. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload!

My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle three with ammonia. I feel like throwing up. And there’s so much hitting my eyes! The fluorescent light is not only too bright, it flickers. The space seems to be moving; the pulsating light bounces off everything and distorts what I am seeing. There are too many items for me to be able to focus (my brain may compensate with tunnel vision), swirling fans on the ceiling, so many bodies in constant motion. All this affects how I feel just standing there, and now I can’t even tell where my body is in space.

3. Distinguish between won’t (I choose not to) and can’t (I am not able to). It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, I hear  Jordan.  Instead, come over to me, get my attention, and speak in plain words: “Jordan, put your book in your desk. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it’s much easier for me to comply.

4. I’m a concrete thinker. I interpret language literally. You confuse me by saying, “Hold your horses, cowboy!” when what you mean is, “Stop running.” Don’t tell me something is “a piece of cake” when there’s no dessert in sight and what you mean is, “This will be easy for you to do.” When you say, “It’s pouring cats and dogs,” I see pets coming out of a pitcher. Tell me, “It’s raining hard.” Idioms, puns, nuances, inferences, metaphors, allusions, and sarcasm are lost on me.

5. Listen to all the ways I’m trying to communicate. It’s hard for me to tell you what I need when I don’t have a way to describe my feelings. I may be hungry, frustrated, frightened, or confused but right now I can’t find those words. Be alert for body language, withdrawal, agitation or other signs that tell you something is wrong. They’re there. Or, you may hear me compensate for not having all the words I need by sounding like a little professor or movie star, rattling off words or whole scripts well beyond my developmental age. I’ve memorized these messages from the world around me because I know I am expected to speak when spoken to. They may come from books, television, or the speech of other people. Grownups call it echolalia. I may not understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.

6. Picture this! I’m visually oriented. Show me how to do something rather than just telling me. And be prepared to show me many times. Lots of patient practice helps me learn. Visual supports help me move through my day. They relieve me of the stress of having to remember what comes next, make for smooth transition between activities, and help me manage my time and meet your expectations. I need to see something to learn it, because spoken words are like steam to me; they evaporate in an instant, before I have a chance to make sense of them. I don’t have instant-processing skills. Instructions and information presented to me visually can stay in front of me for as long as I need, and will be just the same when I come back to them later. Without this, I live the constant frustration of knowing that I’m missing big blocks of information and expectations, and am helpless to do anything about it.

7. Focus and build on what I can do rather than what I can’t do. Like any person, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need fixing. I avoid trying anything new when I’m sure all I’ll get is criticism, no matter how “constructive” you think you’re being. Look for my strengths and you will find them. There is more than one right way to do most things.

8. Help me with social interactions. It may look like I don’t want to play with the other kids on the playground, but it may be that I simply do not know how to start a conversation or join their play. Teach me how to play with others. Encourage other children to invite me to play along. I might be delighted to be included. I do best in structured play activities that have a clear beginning and end. I don’t know how to read facial expressions, body language, or the emotions of others. Coach me. If I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know what to say. Talk to me about Emily’s feelings and teach me to ask, “Are you okay?”

9. Identify what triggers my meltdowns. Meltdowns and blow-ups are more horrid for me than they are for you. They occur because one or more of my senses has gone into overload, or because I’ve been pushed past the limit of my social abilities. If you can figure out why my meltdowns occur, they can be prevented. Keep a log noting times, settings, people, and activities. A pattern may emerge. Remember that everything I do is a form of communication. It tells you, when my words cannot, how I’m reacting to what is happening around me. My behavior may have a physical cause. Food allergies and sensitivities sleep problems and gastrointestinal problems can all affect my behavior. Look for signs, because I may not be able to tell you about these things.

10. Love me unconditionally. Throw away thoughts like, “If you would just—” and “Why can’t you—?” You didn’t fulfill every expectation your parents had for you and you wouldn’t like being constantly reminded of it. I didn’t choose to have autism. Remember that it’s happening to me, not you. Without your support, my chances of growing up to be successful and independent are slim. With your support and guidance, the possibilities are broader than you might think. Three words we both need to live by: Patience. Patience. Patience

View my autism as a different ability rather than a disability. Look past what you may see as limitations and see my strengths. I may not be good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, or pass judgment on other people? I rely on you. All that I might become won’t happen without you as my foundation. Be my advocate, be my guide, love me for who I am, and we’ll see how far I can go


Award-winning author and mother of sons with ADHD and autism, Ellen Notbohm’s books and articles have informed and delighted millions in more than nineteen languages. Her work has won a Silver Medal in the Independent Publishers Book Awards, a ForeWord Book of Year Honorable Mention and two finalist designations, a Mom’s Choice Gold Award, Learning magazine’s Teacher’s Choice Award, two iParenting Media awards, and an Eric Hoffer Book Award finalist designation. She is a contributor to numerous publications, classrooms, conferences and websites worldwide. © 2012 Ellen Notbohm Contact the author for permission to reproduce in any way, including posting on the Internet.

Mom to doctor: ‘You were wrong about Down syndrome’

When Courtney and Matt Baker found out that their unborn daughter had Down syndrome, they were blindsided. The reaction from their doctor left them even more devastated. Now Courtney Baker is responding to that doctor who recommended an abortion with a heartfelt letter about the reality of being a Down syndrome parent.

When they went for a 12-week ultrasound, the doctor told the Bakers that there had been a mistake: though his office had told them that their Down syndrome screening the week before had been negative, the baby girl Courtney was carrying did indeed have Down syndrome. “We were destroyed and completely blindsided,” Courtney Baker told TODAY Parents.

Courtney Baker

Courtney Baker and her daughter, Emersyn.

The Bakers, of Sanford, Florida, said the doctor advised them to see a specialist to discuss their options, but Courtney said there was never a choice. “I told him our only option was to bring our baby girl into this world,” she said. But when she tried to find a different OB-GYN, no one would take her, citing her high-risk status, and when she did go to a maternal-fetal medicine specialist, Baker says, “he suggested we abort due to how low our quality of life would be, and [hers] as well.”

Undaunted, the Bakers decided to go forward with the pregnancy.

Courtney Baker

Emersyn, now 15 months old.

Emersyn (“Emmy”), is now 15 months old, and her mother recently did something she planned to do since before Emmy was born: write a letter to the perinatologist she saw who recommended she have an abortion because of Emmy’s Down syndrome diagnosis.

“I knew the doctor needed to know how wrong he was,” Courtney says. “Once she was born, she just proved it. I think it took so long because we were in such baby bliss. This has been the happiest year of our lives, truly. I feel so at peace and so blessed.”

“My child was perfect,” Baker wrote in her letter. “I’m not angry. I’m not bitter. I’m really just sad. I’m sad the tiny beating hearts you see every day don’t fill you with a perpetual awe. I’m sad the intricate details and the miracle of those sweet little fingers and toes, lungs and eyes and ears don’t always give you pause. I’m sad you were so very wrong to say a baby with Down syndrome would decrease our quality of life. And I’m heartbroken you might have said that to a mommy even today. But I’m mostly sad you’ll never have the privilege of knowing my daughter, Emersyn.”

Courtney Baker

Emersyn and her big sisters, Rhyan and Evynn.

Baker says that what she wants most is “a heart change for our country, for our world,” so that everyone could understand the value and gifts of children with Down syndrome.

“I want doctors to know how valuable and worthy the unborn are, typical and disabled. I want mothers to know that their babies are precious and priceless ad will change their worlds for the better. I want everyone else to soften their hearts and learn that we’re all different, but we all deserve life and we all deserve love,” she said.



Eat Fat, Burn Fat With Right Ketogenic Program That WorkS 90%-Weight Loss Program

Cutting back on carbs is a common approach to shedding body fat. Yet, most gym rats cringe at the notion of a long-term low-carb diet, fearing that they’ll wither away. Truth is, the error lifters typically make is not one of excess but rather they don’t cut carbs enough. Following a ketogenic diet—one in which you drop your carbs to a mere 5% of your total calories—may be the best diet for getting ripped in a hurry, and it’s certainly the most enjoyable. If you can’t imagine giving up burgers, cheese, and bacon to gain visible abs, a ketogenic diet is for you.

Sound too good to be true? Read on for our comprehensive guide to ketogenic dieting, geared toward helping you burn fat, feel better, and perform at your peak. Believe us: You can eat bacon and not end up looking like a porker.


To fully understand how the ketogenic diet works, you must first understand how your body responds to different foods.

When you eat, your body automatically stores part of your meal as fat so it can be released later for energy in times when you’re not eating. When you eat carbs, insulin—a hormone that regulates blood sugar—is released to help take the carbs out of your bloodstream. Since your body can only use a certain amount of glucose (the simple sugar that carbs break down to with digestion) at a time, insulin sees that the excess sugars are shuttled straight into your fat cells for storage. Over time, excess weight, inactivity, and stress can cause your cells to become insulin resistant and make it harder for them to absorb glucose from your blood. If this happens, it becomes difficult to burn stored fat because you’re always refilling your fat cells with glucose.

But you’ve been told since eighth-grade nutrition class that carbs are the best source of energy. Guys who work out have to eat a lot of them, right? “Athletes generally have been told that they need to fuel their exercise with a carbohydrate-based diet,” says Dominic D’Agostino, Ph.D., an assistant professor in the Department of Molecular Pharmacology and Physiology at the University of South Florida. But if you do the math, it’s clear that carbs aren’t the best fuel.


“Your body can only have about 2,500 calories [worth] of carbohydrates stored, but you have almost an unlimited amount of fat for energy,” says D’Agostino. “Even a lean individual has 20 to 30,000 calories [worth] of fat.” In other words, by depriving your body of carbs, you can make it switch to burning fat, which provides more than enough energy for exercise. And when you start burning more fat, you’ll melt more of it away to reveal your abs.

When you begin eating fewer carbs and more fat, your body will slowly begin to produce ketones—energy molecules, like glucose, that are converted from stored body fat. When your body switches over to running mainly on energy from ketones rather than carbohydrate, you are officially in a state of ketosis—hence the name “ketogenic diet.”

The right ratio of macronutrients is essential to achieve ketosis. D’Agostino recommends you get 30% of your calories from protein, 65% from fat and 5% from carbs. (To find a calorie starting point for weight loss, multiply your body weight by 12.) So, a 180-pound man trying to lose fat will eat a total of 2,160 calories consisting of 162 grams of protein, 156 grams of fat and 27 grams of carbs.



“But won’t eating that much fat raise my cholesterol? Won’t I have a heart attack?” These are common questions associated with ketogenic dieting and the skepticism is understandable.

For years, the government preached the dangers of so-called artery-clogging, cholesterol-laden meat and dairy. Fear mongering of fat gained steam in 1958 when Ancel Keys, Ph.D., an American scientist who researched the effects of diet on health, set out to study how saturated fats are linked to heart disease.

Critics contend that Keys thought that the data he gathered from 22 different countries were too scattered and didn’t support a theory that saturated fats raise cholesterol and lead to heart attacks. So they say he ditched the data he didn’t want and published the findings that did back his ideas. Whether worthwhile or not, Keys’ work influenced the United States Department of Agriculture (USDA) and the original Food Pyramid, which recommended minimal animal fat and suggested six to 11 servings of carbohydrates per day —with no distinction being made between whole foods like rice and processed junk like saltine crackers. The nation’s obesity rate has been climbing ever since.

In reality, recent studies have found that saturated fat isn’t as dangerous as that earlier research suggested. A meta-analysis of 21 studies conducted in 2010 by the American Journal of Clinical Nutrition found that there was no relation between cardiovascular disease and saturated fat. In fact, some types of saturated fat can be quite healthy.

The saturated fat in food like dairy and coconut oil may help increase levels of HDL cholesterol, the “good” kind, and thicken particles of LDL cholesterol, the so-called “bad” stuff. This is a positive, because it’s the smaller particles of LDL that act as debris in the bloodstream, sticking to artery walls and helping to form plaque buildup.

Saturated fats can also help prevent the oxidation of unsaturated fat that can occur with cooking. Unsaturated fats aren’t stable at high heat, and have the potential to become heart-unhealthy, even carcinogenic, unless they’re paired with a saturated fat. For this reason, it’s better to sauté foods in coconut oil or butter than olive oil.

Need another reason to have a burger tonight? (Well, here’s one anyway.) At least 50% of our cell membranes are made of saturated fat. Without the rigidity that saturated fats provide (with the help of unsaturated fats to keep the cell walls liquid), cells would have no governor. Too many messages would go in and out of them, and that can lead to problems as serious as cancer. Cells would also be less resistant to infection from viruses and bacteria.

Finally, eating more fat may just make you manlier. A study published in the American Journal of Clinical Nutrition showed that men consuming a high-fat diet raised their testosterone 13% above those following a low-fat diet. If you didn’t know, greater testosterone increases the potential for bigger muscle gains, better sex, and a whole bunch of other things men enjoy.

Now consider that ketones themselves—which, remember, are harvested from fat—have a positive effect on inflammation, cancer, and even brain health. D’Agostino says that while our brains lose the capacity to use glucose for fuel with age, that decline never occurs with ketones.

“You have a lower risk of developing cancer in the long-term because you have a dramatically reduced level of free radicals when you use ketones versus sugar,” says Dallas Hack, M.D., Chief Science Officer of Kegenix, a patented supplement that induces ketosis and is based on D’agostino’s research at the University of South Florida.


Getting into a state of ketosis requires a little effort and adjustment, but you’ll find it much easier than most diets in the long run because the menu is bound to include foods you enjoy. Begin by restricting your carbs, hitting your macros daily, and adding MCTs (medium chain triglycerides) to your diet—coconut oil, organic butter, organic milk, and palm kernel oil. This type of fat primes your body to start producing more ketones. You should reach ketosis within two or three days. Kegenix, the world’s first patented formula for inducing ketosis can help jump-start your body’s ketogenic engine . Keto sticks, available at any pharmacy ( carries them), measure the amount of ketones in your body from your urine stream and can be used to confirm whether you’re in ketosis or not; when the level of ketones reach 0.5 and 3.0 millimolar (mM) you have reached a state of ketosis.

The worst part is the initial drop in energy that you’ll experience while your body is still craving carbs, but, according to D’Agostino, two to three weeks is all you need to adapt. If you can do so safely, use coffee and other sources of caffeine to stay alert in the meantime can help minimize this experience, known as the “keto flu” by providing you with exogenous ketones. You may also notice that your muscles begin to look more flat and deflated due to a loss of glycogen, but this is also temporary as your body adjusts. “As your body shifts to oxidizing fat for energy, [your muscles] tend to fill out, especially if you’re eating sufficient levels of fat and not restricting calories [too much].”

The calories, however, should be coming from nutrient-dense foods: Bacon, organic butter, salmon, tuna, cuts of beef—and any other meat—along with green vegetables are all recommended. These foods are naturally more satiating so you may even find yourself eating less than you think. Remember that while fatty foods are OK, carbs aren’t. You can have a burger but without the bun and very little ketchup. You can eat cheese and pepperoni but not pizza.

As for training, since your energy will be down during your two to three-week break-in period, be conservative and perform fewer total sets in your workouts—but you shouldn’t experience a loss in strength. See our special workout program to use during this period and you’ll see you can make gains without carbs in your system.



Down Syndrome Is A Genetic Disorder:5 Strange Realities About Parents

“You know it’s part of her ‘syndrome.’”

There are many characteristics associated with Down syndrome, but that doesn’t mean every individual with Down syndrome has every characteristic. So when you try to tell me my child will be “stubborn” or contract a life-threatening illnesses because “it’s part of her syndrome,” understand that I will internalize a massive face-palm before turning and walking away.


“You know she’ll never get married!”

Is that really what you think? And if so, you really shouldn’t have verbalized it. Eden may get married, she may not and it would be the same if she didn’t have Down syndrome.

Eden will live a full life. She will go to school, gain employment and, much to her father’s horror, she will have boyfriends. Who knows what will happen after that? What I do know is that society is changing and there are wonderful people all over the world with different abilities getting married. At the end of the day, it’s her choice, not yours.

“What’s wrong with her?”

Sometimes you just have to laugh, and that’s exactly what I did after hearing this statement. This was yelled at me by the shop assistant from across the store, a good 10 meters away so everyone in the store would turn and stare.

It was while Eden still had a nasal gastric tube, and while I believe this comment was aimed at the tube and not at her diagnosis, it wasn’t the politest way to ask. I explained the tube this time and then every time we visited the store for the next 10 months.

“She couldn’t ask for a better family!”

Darn tootin’, its true, Col and I are all kinds of amazing super parents. But while in context this is meant as a compliment, it also comes in other forms of statements, and the most common is, “God only picks special people to parent special children.” The choice is really ours.

“Oh, that’s a shame!” (This also comes out as “I’m sorry…”)

What ever happened to the good old-fashioned celebratory greeting at the birth of a child: “Congratulations!”? So simple, yet eloquent, goes well with pink or blue and trust me when I say after the whole birthing process, it’s all any parent wants to hear (diagnosis or not)!

 “How long will she live for?”

My response to this is always, “I don’t know, how long will you live for?” They stare at me blankly, and there’s an awkward silence while I internalize yet another face-palm.