On Autism and Bullying: A Plea to Parents of Neurotypical Children

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Today I took the day off blogging and took my daughter, Wee Girl, and my son, Little Man, on a trip to Battersea Park Children’s Zoo, a small zoo located in… yep, you guessed it, Battersea Park. They have a selection of smaller animals and a fairly large play area with plenty of room to run around.

The children were happy and amenable, and we had a perfectly nice day, except for one encounter that left me feeling uncomfortable. Wee Girl was on one of the a fort-like structures. She was sitting down, apparently happily occupied, so I paid my attention to Little Man, who had only just woken up.

Gradually, I became aware that all was not well. A group of children were sitting beneath the fort where Wee Girl was sitting. I’m pretty sure they were talking about her, and not in a nice way. Maybe she was mouthing some of the wood chips. I suspect they may have been throwing them — not at her, but in her direction. I don’t know exactly what went on, and Wee Girl was oblivious (at least, I hope she was oblivious. But as I’ve already learned, just because it doesn’t look like she’s aware of something doesn’t mean that she isn’t paying attention). The whole situation left a dark shadow over an otherwise lovely day.

I was bullied at school. Never physically, but the kind of low-level nastiness that gradually grinds away at your self-worth until there’s nothing left but a stub. When I first became pregnant, I wanted a boy. Why? Because I never wanted my child to go through what I went through, and I felt that life would be somehow easier for a boy (OK, OK… but I wasn’t in a great place at the time). When we learned our baby’s gender, my heart sank just a little — not out of disappointment, but out of fear. And then, Wee Girl was born, and she was beautiful and perfect and I knew my fears of her being bullied because of the way she looked were groundless.

Well, men make plans and God laughs, because bullying of children and adults with autism is a huge problem.

Early this year, the Wirral Autistic Society conducted a survey about “mate crime,” a form of bullying where people with autism are bullied or manipulated by people they think of as friends. It was a fairly small survey, limited to the Merseyside area, with only 141 respondents, but still the results are pretty chilling.

Eighty percent of respondents over the age of 16 felt they had been bullied or been taken advantage of by someone they had thought was a friend. Eighty-five percent often feel lonely and left out. This number is just 11 percent in the general population, according to the survey.

The full survey is here, and I urge you to read it. Even if you are the parent of a neurotypical child. Especially if you are the parent of a neurotypical child. The quotes from the respondents are particularly worth reading. They’re heartbreaking, really.

Meanwhile, in the especially sad news corner, the parents of a teenage girl with autism have removed her from school after an anonymous note made claims that, among other children, she had been the target of bullying from a teacher. An investigation has been launched and it may well turn out to be lies, but this strikes fear into the heart of every parent of a child with communication difficulties. Because, what if?

The relatively recent revelations about institutionalized abuse have knocked my trusting, calm, safe little world head over heels. On top of that, this nasty little story is kicking it repeatedly in the backside with a hobnailed boot.

The letter reeks of malice to me, although I don’t blame the parents for removing their daughter from school for one millisecond. But if the letter is a pack of lies, what sort of person would send such a vicious, spiteful note, deliberately undermining the parents’ trust in the school and disrupting the poor girl’s education? Whether the letter is true or not, she remains the victim of bullying. There is no good end to this story.

I trust the school where we are sending Wee Girl. But what will happen in the next five years, the next 10? Who will her friends be, and will she be able to trust them? All I want is for Wee Girl to be happy. If I could, I would wrap her up warm and safe and cozy in a blanket and keep her safe from the world. But I can’t do that, and even if I could, that’s not what parents are meant to do. All I can do is equip her with the tools to cope as best I can and send her out into the world, hoping with all my heart she doesn’t get hurt.

So, if you are a parent of a neurotypical child, please remember this: not all bullying is obvious. Some is subtle, quiet slip-under-the-radar stuff, and even the person it’s happening to might not know it’s happening. It’s talking about a child who isn’t responding appropriately because he is unable to engage with his peers. It’s laughing at a child who is mouthing something, or making strange noises, or flapping his or her hands, or spinning around. It’s ostracizing them because they are different, because they are “weird.”

Teach your children that this isn’t acceptable. Please don’t just assume they’ll know automatically, or that they’re sweet and kind and would never behave that way. Don’t kid yourself. Kids can be mean, even the good ones. Part of it is because of lack of understanding and part of it is the influence of their peers, but it’s all horrible and it needs to stop.

Follow this journey on All Past Midnight.

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How Tom Cruise Encouraged Me to Speak Up About Mental Illness

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Since Tom Cruise publicly denounced actress Brooke Shields’ decision to treat postpartum depression with medication almost 10 years ago, his words have resonated in my head. “You don’t know the history of psychiatry. I do,” he told Matt Lauer. “There’s no such thing as a chemical imbalance.”

I’ve watched Mr. Cruise’s interview about his take on mental illness half a dozen times, each time finding myself more dumbfounded. I wasn’t angry at him for expressing such an opinion. That’s the beauty of the First Amendment. I was discouraged by his tone, demeanor and lack of willingness to discuss mental illness. But what really struck a chord with me was knowing that thousands and thousands of people were watching this interview – many being Tom Cruise fans who value, trust and believe everything the celebrity says. Most importantly, many of whom could be silently living with a mental illness themselves. Now after this interview, they could be losing belief in psychiatry and treatment options.

But Mr. Cruise made a valid point when he stated that people should do their “homework” on psychiatry. They certainly should before drawing their own conclusion. And so I did. I started writing down my own feelings, research, experiences and opinions on psychiatry. (After all, if Mr. Cruise could do it, then so can anyone!) I’ve put great effort into researching and understanding its origin, various types of treatment, effects of genetic makeup and most importantly, the views that others have.

For me, understanding the existence of chemical imbalances has been a big source of personal comfort. While treatment programs come in all different shapes and sizes, the outpatient program I was in was not tailored to one specific type of mental illness. My doctors did warned there would be people in my program who were from different backgrounds, battling issues unlike my own.

I entered the program thinking I only wanted to talk to people who had depression like myself. I was narrow-minded and didn’t think I could learn from people who were going through different experiences. But I thought of Tom Cruise and realized how listening to others, rather than constantly speaking, can enlighten your personal inner soul. I learned people with mental illness come in all different shapes and sizes, and that one person’s unique experience can relate to someone else’s, even if they have completely different issues.

If anything, I owe Mr. Cruise a big “thank you” for giving me the courage to voice my own opinion about mental illness. Not only that, but for reiterating the value of listening to others’ experiences and opinions. Being biased doesn’t help to inspire or teach anything.

Although it took several years to gather my thoughts into complete sentences, it helped me to understand myself, but most importantly it taught me the importance of being tolerant towards others’ decisions, experiences and views. The 2005 Tom Cruise interview magnified the necessity for listening to one another, because without this, how can we learn to understand and respect one another? So Mr. Cruise, thank you for the inspiration to speak up, but most importantly, to listen first.

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7 Everyday Chores That Became a Gift to Me After My Dystonia Diagnosis

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For three decades, I had limited use of my arms and legs due to spastic diplegia cerebral palsy. The idea of completing simple tasks baffled me. As I’d swing at recess, I’d watch my classmates chase one another, kick a football without falling on their faces or jump rope. I’d wonder, “How do they do that?

Later, as a mom, I would hear parents complain about their long list of chores and I’d think to myself, “I would give anything to be a more involved parent.” Five years ago, I got a new diagnosis (dopa responsive dystonia), new medication and a new lease on life. These days, I still hear parents complain about their long list of chores, but now I think, “I’m so glad I can do those things and be grateful for each and everyone of them.” 

That’s why I decided to make a list of what many people think of as nuisances but that I consider a wonderful gift.

1. I can put clean sheets on a bed. This once incredibly frustrating job took me so long that I rarely did it myself. Instead, my mom would come do it for me.

2. I can bake cupcakes, cookies, homemade bread and bars. (Yes, I’ve gained a few pounds since my correct diagnosis.) My cakes always looked pathetic and would never be served to company. Now, I bake and decorate cakes from scratch and am often asked, “What bakery did you get this from?”

3. I can drive my daughters to basketball practice, Girl Scouts, school, orthodontist appointments, doctor appointments, church classes, friends’ houses, etc. And I can walk them into each one of these places. Yes, it’s more time-consuming, but I’m able to build friendships with other moms now. The days of feeling alone are gone.

4. I can do more forms of exercise. I had been going to the gym since I was 14. It was something that I had to do to maintain muscle mass, and I was fortunate that my mom was always willing to drive me, even as an adult. Now, I can meet up with friends to walk and even attend yoga classes at the gym. Yoga is one of my favorites because I love to challenge myself and see how I continue to improve. Every class puts a smile on my face as I think to myself, “This would have been impossible before.”

5. I can tuck my son into bed at night. Because I couldn’t do this with my daughters, I felt like a failure as a mother. Now, when I kiss my toddler’s forehead before leaving his room, I tear up thinking, “How did I get so lucky do be able to do this every single night?”

6. I can complete household chores. Before my new life, I could only do one chore a day, and I felt like my house was never clean unless my mom came to help or my husband did it. Being able to clean a toilet without being afraid of falling face-first into the bowl is a relief. Being able to load the dishwasher without pain surging through my toes is a gift. And being able to wash the clothes my kids are physically capable of getting dirty while playing outside is a blessing. 

7. I can go grocery shopping and run other errands. I always had to be driven to the store and then helped onto my mobility scooter to complete the chore that most dread to do. Being a young woman riding up and down the aisles caused plenty of stares and sympathy smiles that I never got used to.

My list could go on and on. I am beyond grateful for my newfound mobility, and it doesn’t bother me that I still have days where my balance is an issue or the knots in my back seem unbearable. I still love each and every day because I have something many people don’t have — my independence. 

So, please, take a look at my list and ask yourself, “Do I ever complain about cooking for my family, running errands on a daily basis or cleaning the house?” If the answer is yes, remind yourself that those annoyances are something that others pray for. I know this because I used to be one of them.

Follow this journey on JeanAbbott.com.

September is Dystonia Awareness Month. To learn more about this neurological movement disorder, contact the Dystonia Medical Research FoundationTo sign the White House petition to have September formally recognized as Dystonia Awareness month, click here

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The Sentence That Started My Journey to Eating Disorder Recovery

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During my first year at a university, I was preparing for an audition to get into a competitive music school. I dropped a few classes to put all my energy into it, and my music teacher was sure I’d get in. But sometimes things don’t work out as planned, and I didn’t get accepted. For some people this would’ve been OK. For me, the situation brought up a stack of thoughts I’d previously kept hidden.

Suddenly, a voice I’ve always had grew a bit meaner. It said, “You’re a failure. You’re disgusting.” As a result, I began to base my self-worth entirely around weight.

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Bronwyn, before going to the hospital.

Here I am: 17, a perfectionist and getting more obsessed with eating as little as possible while exercising as much as I could. I convinced myself if I gained any weight, no one would love me. I stopped seeing my friends, stopped eating at restaurants, became angry at my family and lost interest in things that used to give me joy. Underlying my obsession was a deep sense of self-hatred and gut-wrenching loneliness. I wanted so badly to feel loved and accepted, but I felt I needed to isolate myself so people couldn’t interfere with my obsessions. I told myself, “I don’t deserve to eat,” and “I’m disgusting.” Repeat these things enough and you stat to believe them. Keep on doing it and you get terribly depressed. At my worst, I was hearing voices that told me how repulsive I was and wanted to end my life.

Anorexia not only affected my thoughts but had severe consequences for my physical health. I was so malnourished my heart-rate dropped to 30 beats per minute and nurses feared I might have a heart attack. My hair began to fall out. I bruised easily and my skin was blue. Unable to stand for long periods of time, I had to quit my job in retail.

I knew something was wrong with me but I couldn’t stop. My illness was rapidly taking over and I couldn’t get out of the hole I had sunk into. Fortunately, I had a doctor who helped me understand I was sick and needed help. With the support of my family and friends, and on my psychiatrists recommendations, I eventually agreed to hospitalization. I participated in therapy and began to regain weight.

Recovery was a very scary prospect. It would mean leaving all my rituals and obsessions that kept me “safe” and venturing out into the unknown where I could be judged and rejected.

But the trigger point for my recovery came from a guest who visited one of our therapy sessions in the hospital. A few years ago she was hospitalized with anorexia, she told us, and had to use a feeding tube because she refused to eat. She wanted nothing more than to die.

“But now I’m recovered,” she said. We were gobsmacked and asked her how she did it.

“I just started living my life, hanging out with friends and getting coffee,” she replied, shrugging her shoulders. “I was so busy enjoying myself, I forgot about food.

I think the other patients were skeptical, but I held on to what she said. It became the most valuable thing I’ve ever heard about recovery. She started living life and the eating disorder became powerless. That’s exactly what I wanted. Deep down, I felt a strong conviction I still had something to contribute. I couldn’t end my life now and let anorexia win. I had to get a move on, start living and I had to do it right now.

Life after the hospital was better, but still not smooth sailing – living always involves ups and downs. I developed bulimia a few months later, spending hours each day exercising between binge-eating. I abused laxatives, purposely gave myself food poisoning and engaged in a number of other disordered behaviors.

Although I was working hard on my self-esteem, I still believed I was unlovable. Every aspect of eating was governed by rules, and I had to make a commitment to challenge these rules every day. As the obsessions began to lift, very slowly, I began to enjoy life. Anytime I got invited out I would say, “Yes,” no matter what it was. I began to listen to music again, enjoy art, read books and became a little more lively. I started feeling emotions and could laugh again. After a long stretch of not being able to cry, I finally felt genuinely saddened over things.

As I challenged myself, I no longer needed anorexia to live the life I wanted to. I let anorexia go.

980360_10201067790070643_729506810_o I’m not going to sugarcoat this part, though. It did take years until I finally felt OK with myself. I did have to work every day to put my vision of an eating disorder-free life into place. I got angry at myself when progress was slow – sometimes I would make the same mistake over and over again until something clicked and I could move on. It took years to remove rituals involving food, the diet mentality, self-criticism and to shift my core belief that I was unlovable.

Now, I can truly say I like myself. Most of the time I give little thought to my body, and I love that. The voice that would tell me I was worthless and unlovable has become dull, white noise. I have no room for thoughts that tell me I’m nothing.

I think my greatest pride in being recovered is being truly, authentically me. Since recovering from anorexia, it’s like I finally fit into my shoes. I am me, I’m OK with that and there is nothing I would change.

 This post originally appeared on Bronwyn’s website

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

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What Tolerance vs. Acceptance Looks Like on a Schoolyard Playground

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Sometimes I find myself worrying about my son with autism, Max, and what his life will be like in the future. What if he is teased by his peers in school? What if he never knows what it’s like to be in love? What if he’s all alone in middle age? What if? Such thoughts are weighted down with the knowledge that my husband and I are not spring chickens. Fast-forward my 7-year-old to 45 or so. Will he still need his parents in some way? And if so, will we even be around? Others have tried to reassure me that Max has a loving safety net created by his family and friends, including three siblings who will never let him fall. While this gives me some solace, it doesn’t completely block the worrying.

After hours spent dwelling on what I hope Max will experience as he grows, I’ve come to realize what I don’t want for him — tolerance. Don’t get me wrong, I’d much prefer that the people Max meets express tolerance toward his differences, rather than bullying. It’s more that I see tolerance as merely the first step in a long journey toward acceptance and not as the end destination itself.

To better illustrate what I mean: When I was in school, there was a boy who I’ll call “Michael.” Michael was a child who was clearly different and didn’t seem to have any true friends. One day in fifth grade, our teacher asked me to be “in charge” when he had to leave the room. As soon as the teacher returned, I rushed over, saying loudly, “Here’s a list of the kids who talked. Michael talked the most, at least 10 times! I know he can’t help it, though.”

I remember the teacher giving me a “look,” and me not understanding what message he was trying to convey.

“But Michael isn’t supposed to get in trouble because he has problems with his brain, right?”

“Thank you, Alicia. Please return to your seat.”

I remember feeling confused by my teacher’s response and being totally oblivious to Michael, who was sitting in the front row and had likely heard every sanctimonious word out of my mouth.

Other Michael stories arise. I remember noticing boys teasing him at recess and running up to them yelling, “You leave him alone!” I remember the warm feeling that coursed through my veins at having done such a good deed without even expecting anything in return! Only now my memory goes further, to a less warm place. I’m reminded of how quickly I left Michael on the playground by himself so I could go and play with my friends. Did I invite Michael to come play, too? Of course not! Because my standing up to bullies wasn’t for Michael’s sake, it was for my own, to feel good about myself, not to make friends with someone who seemed so…strange.

Fast-forward a few decades. When my son, Daniel, was in second grade, I used to wait with him on the school tarmac before the bell rang. One morning, I noticed a little boy who was standing alone, looking like he didn’t know quite what to do. I remember feeling relieved the next morning when I saw the little boy’s mother waiting with him, holding tightly onto his hand.

A few months later, I met with Daniel’s teacher for a parent-teacher interview. “That son of yours made me cry the other day,” she said.

“Daniel made you cry?” I asked. “I’m so sorry!”

“No, no,” she said. “He made me cry in a good way!”

“He did?” Now I was even more confused.

“There is a little boy in our class who is autistic,” she confided. “We’ve talked to the children and made sure no one bullies him, but we can’t force them to play with him. Each recess he stood by himself until last week when Daniel asked him if he wanted to play.” She paused. “That’s all it took. Ever since they’ve been playing together!”

At supper that night, I brought up the topic to Daniel. “Do you notice anything different about your friend?” I asked.

Daniel shrugged. “Well…he jumps up and down a lot and talks in a kind of funny voice when he’s excited, I guess.”

“And what do you like about him?”

Daniel shrugged again. “He likes to play Star Wars with me and he’s fun. Plus, he wants to be my friend, too.”

And that was that. For the next several years until we moved away, Daniel and his new buddy were best friends. Not because Daniel tolerated him, but because Daniel liked him for who he was, with being fun more important than having a funny voice or jumping up and down.

That’s acceptance. And that’s what I hope more than anything for my own little boy.

Alicia Hendley the mighty.1-001

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5 Tips for Interacting With My Child With Special Needs

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One night, I didn’t feel like going out for dinner. It was raining and I wanted to stay in. But the rain stopped and my hubby, Ralph, convinced me to go out. So we went to a local salad bar restaurant. After going through the salad buffet, we found a spot and settled in.

My son, Samuel, was persistent in asking for his cereal. The sound he makes reminds me of a duck.

Ralph jokingly said, “You’re a broken record, kid.”

A lady sitting at another table laughed.

Evelyn Mann the mighty.2-001

We were almost done with our meal when the lady came over and said she was a pediatric nurse. Ralph coaxed Samuel into giving her a wiggle and smile. Yep, the smile does it every time.

She asked about our little guy, and we joyfully answered her questions. What parent doesn’t love to talk about their kid? It was so nice to fill her curiosity and share the joy of our son.

We left the restaurant feeling like we made a new friend. We would have missed the moment had we not gone out.

Next we went to Sam’s Club. This time we erroneously left Samuel’s cereal in the car. It just started to rain when we got in so we decided to do a quick shopping trip.

As we were going down the last aisle, I saw a woman in a wheelchair with a trach. Excited to introduce myself, I explained Samuel had a trach, too. She smiled back and asked us a few questions about our son. She was so warm and friendly, and I felt comfortable asking a question I’ve always wanted to know.

“What does it feel like to be suctioned?”

She explained it didn’t feel good and that it was like the feeling you get when you gag. Instead, she uses her cough reflex to avoid suctioning and hasn’t done it in five years.

Fascinating. We suction Samuel several times a week. I pondered how to teach him to learn purposeful coughing as an alternative.

She happily shared her experiences with us as we continued to talk. Soon, Samuel was almost inconsolable, demanding his cereal. We said goodbye to our new friend. I headed to the check-out while Ralph returned to the car where the golden cereal awaited.

Waiting in line, I smiled. What I would have missed if we hadn’t gone out.

If you are wondering how to interact with people who have special needs, our night out gives a few hints (plus a few extra):

1. Don’t be afraid to introduce yourself.

Like the nurse did. Or like I did when meeting the lady at Sam’s Club.

2. Don’t be afraid to ask questions.

Even if it’s a simple question like asking a child’s age. You never know what you will learn. I share about the type of dwarfism Samuel has to create awareness. And if you have kids, that awareness is absolutely educational and worth sharing with them.

3. I know it’s hard, but try not to stare.

Smile instead. It just may lead to a conversation.

4. Don’t touch the child or the stroller.

Even shaking hands is something I prefer not to do. I have to be constantly vigilant to keep Samuel healthy. Before having Samuel, I wasn’t so concerned. I also got a cold almost every year. Now, I rarely get a cold. And, thank God, neither does Samuel.

5. Do fuss over the kids.

I’ve had many people come up to me and comment on how cute Samuel is. I use that opportunity to share something about our little miracle and hopefully get him to smile, warming another heart.

So the next time you’re out, try one of these suggestions. You never know, you just might make a new friend.

Evelyn Mann the mighty.3-001

Follow this journey on Miracle Mann.

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