My Philosophy of Autism as a Mom to a Child on the Spectrum

When my daughter, Caroline, was first diagnosed with autism, it was a surprise. I had been told countless times that Caroline was not on the spectrum — she was too social, made eye contact, did not engage in repetitive behaviors — so when she was diagnosed, I was completely unprepared. I didn’t know about sensory integration issues or joint attention; I surely didn’t think Sweet Caroline could permanently scar me or purposely hurt herself; I thought elopement was when you ran away to get married. I knew I had so much to learn.

I didn’t realize in order to learn about autism, I would have to develop a philosophy of autism. The sheer amount of conflicting information about autism forces parents of recently diagnosed kids to quickly develop a philosophy of autism, almost unwittingly.

My Philosophy of Autism:

I vaccinate because I believe science knows more than Jenny McCarthy.

I never anticipated that autism would be part of my life’s journey, but I love my tour guide.

In good times and bad, Caroline has autism. It’s part of who she is. I’m not interested in a cure, but I am interested in therapies and interventions that help manage Caroline’s challenging behaviors associated with autism and improve her quality of life.

Autism is a family condition in that it impacts every member of the family. Every single member of my family is different because Caroline is on the spectrum. Nearly every aspect of every day of each of our lives is impacted by Caroline’s autism.

I support early intervention and believe that insurance companies and the government have a big part to play in funding these interventions.

I first support research that improves the lives of those living with autism, and then I support the search for a cause of autism. By finding the cause of autism, I believe the medical community will have a greater understanding of autism and potential therapies. I wouldn’t trade Caroline for the world, but I would trade the toll her care has taken on my family’s health, careers and finances.

I don’t think awareness is enough. I want people to accept Caroline for all that she is and all that she has to offer.

Being a parent to child with autism is hard; it’s the hardest thing I’ve ever done. But parenting is one of the hardest things most any parent does. There are days my typically developing child (Vivian) tries my patience in ways Caroline couldn’t dream of — but people never say to me about Vivian, “I don’t know how you do it.”

Caroline’s happiness is not enough; she deserves to feel accomplished and challenged by things in life beyond her autism.

If you know one person with autism, you know one person with autism. I know Caroline. She is not one in 68 — she is one in a billion. Caroline is capable of the unthinkable (good and bad). She is different, but that should be celebrated, not mourned. And she is my hero, not because she has autism but because of how she handles it — with a smile of her face and a joke on her NOVA chat.

Follow this journey on Failure to Thrive or Ability to Overcome?


Why I Stare at People With Special Needs

I stare at people with special needs. I do. Maybe you don’t notice – I hope not! I try to be stealthy about it. My family has been stared at a lot over the years, and it always made me feel self-conscious. Still, I find myself looking anyway. Because I know how it feels to be stared at, I try to watch you without you noticing.

You see, my son, David, who had a whole bunch of special issues, died earlier this year. He had uncontrollable sub-clinical seizures that accumulated brain damage for more than three years until he passed away at 8 years old. For years, we would take him out in public and get stared at. Years of tube-feeding, diaper-changing, wheelchair-pushing, wiping drool, managing babbling, sign language lessons, medications, seizures, ambulance rides, balancing sibling needs and all of the stuff you have now. We got stared at.

Carin Bockelman the mighty.2-001

We had really positive experiences with some of the people who stared at us. We were able to educate those who just wanted to know David or better understand his issues. Sometimes we made friends. We met a lot of people who shared stories of loved ones with issues and needs similar to David’s, and those were usually really encouraging and uplifting experiences.

But we also had negative experiences. Sometimes just getting caught staring made people uncomfortable. Parents would scold their children and turn their backs on us. (For the record, I prefer parents to walk over with their children and introduce themselves, so they’re teaching their children how to interact with someone with special needs rather than teach their children how to shun them.) We had a few times when we got unhappy looks, and I often wondered which issue offended them. Was it the drooling? The interracial adoption? That we had the audacity to bring our son with us to a restaurant?

So please forgive me, but sometimes I watch you and your family. I know it might be more polite to come over and introduce myself, but I’m just not ready to talk casually about David yet. It may sound unfathomable, but I miss all the stress and the complications that went into taking care of David. I miss David. And when I see you and your family, I watch with nostalgia and sadness. I watch with empathy and love and little jealousy. I hope, if you notice me watching, it’s the empathy and love you see.

Police Officers Fulfill the Last Wish of a Mom With Terminal Cancer

August 22 was a day that Jazmine Delgado and her mother won’t soon forget.

Jazmine’s mother has terminal brain cancer, and although the family couldn’t afford it, her dying wish was to see 14-year-old Jazmine have a quinceañera, NBC reported. A quinceañera is a coming of age party typically celebrated on a girl’s 15th birthday.

When gang enforcement officers from the Los Angeles Police Department’s Central Division met the mother and daughter at a community event and learned about their situation, they stepped in to help. Officers, together with local businesses, organized the party, which took place on Saturday in East LA.

There was even a uniformed LAPD officer serenading guests with a mariachi band.

And Jazmine got the princess treatment complete with a pink sequined dress.

Jazmine’s mother had her wish come true and even got to share a special dance with her daughter during the evening, all thanks to these kind officers.

Watching Jazmine and how happy she is and how energetic and just ecstatic she is about today, that’s the reward for all of us,” LAPD Sgt. Janet Kim told NBC.

Get more on the story from the video below: 

h/t Reddit Uplifting 

Please Stop Asking If Eating Disorders Are a ‘Choice’

There’s been media attention on whether eating disorders are a lifestyle choice, and the ever-present media sensationalism about dieting and the obesity epidemic only fuels the fire.

Advocates say arguing that eating disorders are a lifestyle choice blames victims and prevents treatment, whereas opponents would talk up personal responsibility and argue that, if people with eating disorders are victims, they are victims only of their own choices.

Frankly, I couldn’t care less whether a person living with an eating disorder chose it or not. Instead, I believe this debate is completely irrelevant. The person who chose the eating disorder would be just as deserving of help as the person who did not choose it. In fact, anyone who experiences psychological or physical distress is worthy of timely and effective treatment. The same is true of the homeless or those living with drug, alcohol or gambling addiction.

We might be tempted to think by arguing for eating disorders as a lifestyle choice, we’re giving people with eating disorders the presumption they have control over their own actions — just like we would any other person. Any consequences of that choice, therefore, is that person’s to deal with and theirs alone. This view is largely due to ignorance.

Eating disorders are a grab-bag of distorted beliefs about weight and shape; lack of self-esteem and over-emphasis of the importance of shape and weight to self-worth… And these are just the obvious indicators. People with eating disorders are known to show abnormalities in attention, impulse control and cognitive flexibility. They show biases in which pieces of information they attend to in their environment, and symptoms often resemble those seen in individuals with obsessive-compulsive disorder. Evidence is beginning to accrue to suggest that eating disorders have a genetic basis.

How do I know this? Well, I’m a PhD student so am capable of surveying the relevant peer-reviewed literature. I’m also a person who has recovered from an eating disorder. I was hospitalized with anorexia at 18 years old. I heard voices that encouraged me to believe it was better to die than to eat food. Now 24, happy and healthy, I’ve thought long and hard about the causes of my eating disorder and have come to the not-so-profound conclusion: It just happened.

But, let’s say I did choose the eating disorder, that I chose to feel so fatigued I was forced to quit my job, chose to spend hours exercising when I was at risk of going into cardiac arrest, chose to constantly ruminate on how unloved I would always be. The choice is irrelevant because, eventually, I no longer had control. I couldn’t choose to eat food — the voice in my head wouldn’t let me. It told me I needed to stick to my strict schedule or else. As a result, I couldn’t control my weight. I couldn’t control my physical health and I certainly couldn’t control my mental health. I could only stand back and watch them deteriorate.

It started, like many others, innocently enough with a desire to be healthier. A stressful event then took place, and it turned into an eating disorder. Not once did I look at pro-anorexia websites or want to be “anorexic.” My eating disorder was a sane response to coping with extraordinary circumstances happening in my life as a young woman. I’m grateful that my family and (some) health professionals took the time to see me as more than a young woman obsessed with vanity and, instead, see me as a young woman who was very, very ill.

The bottom line is this: Asking whether mental illness is a choice is no more relevant to the mentally ill than asking whether Tuesdays are better than Wednesdays to the non-mentally ill. Above all, asking whether mental illness is a choice does harm. It sees individuals as victims of their own (apparently) senseless choices rather than a product of extraordinary circumstances largely outside one’s own control. Most of all, it stigmatizes rather than humanizes the individual, and so hinders early intervention and the implementation of timely and effective treatment.

When you next ask, “Is it a choice?” when talking about eating disorders, ask instead, “What happened?” That is, try to understand what happened to make the person feel and act the way they do. Talk to a person experiencing mental illness, if you can. Talk to me. Whatever you do, don’t deny someone the opportunity for help because you brazenly believe they’re at fault.

This post originally appeared on Bronwyn’s website

How I Use Self-Compassion to Help Combat My Mental Illness

I’ve made some pretty poor choices as a mom over the years, and it’s been really hard to forgive myself. In fact, I can’t say I’ve moved past a lot of the mistakes I’ve made. Add in a mental illness like bipolar disorder into the mix, and you’ve got a perfect storm of shame and remorse.

Late last year, my husband and daughter went out to the movies so I could stay in and have a relaxing night to myself. Unbeknownst to my husband, I’d been struggling quite seriously with suicidal thoughts. While he and my oldest were out at the movies, I made the very poor choice to take a few bottles of pills and attempt to end my life. Fortunately, I’d been talking with a friend that day who realized I was in a very dark place, and she sent the sheriff’s department out to check on me. My husband got the phone call as he was leaving the movie.

Having a serious mental illness like bipolar disorder and trying to be a “good” parent can often feel like an effort in futility. Why should I even try? I’ll never be good enough. I’ll never be as good as my coworker who manages to get to work on time every day. I’ll never be as good as my neighbor who gets a cooked dinner put on the table every night. I’ll never be as good as the PTA president who volunteers every week at my kids’ school.

But I need to wake up and see my good enough is enough, and that all these “never enough’s” are destroying my self-esteem.

I have a job — that is enough.

I feed my family — that is enough.

My kids are doing fine in school — that is enough.

I can’t look at everyone’s strengths and feel less-than because they aren’t mine. It’s like that saying, “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”

So where is the lighthouse in this storm of shame and remorse? For me, it’s self-compassion. Treating myself kindly, with respect and with empathy when I mess up is the key to helping me get through these shameful moments. When you practice self-compassion, you’re making progress. It’s the difference between guilt and shame: Shame is when you tell yourself, “I am bad.” Guilt is when you tell yourself, “I did a bad thing.” See the difference? Even though I missed the school play because I was in the hospital, or my children saw me lying on the couch for days on end because I was too depressed to take care of myself, I’m still not a bad person. 

Shame thrives in secrecy and can’t abide being brought into the light of day. Once you’ve told yourself you’re OK, if you can, find an empathetic person you trust to be vulnerable with. Share with them how you’re feeling. Share these experiences with them, with someone who will listen empathetically or someone who will hopefully simply say, “Me too.” Although this is something I’ve struggled to do, from personal experience I can assure you that having someone like this in your life is so worth it.

Practicing self-compassion and being kind to myself has turned around my life. When you’re kind to yourself, you’ll find that a deeper love and connection to others than you ever thought possible. It all stems from knowing you are worthy of love and belonging. But it isn’t easy to get to that point in life — it takes lots of work to really know this. I know, I’m not there yet. I’ve needed the help of many loving people to even get where I am now. But with time, the right tools and the desire to really change, all things are possible.

Follow this journey on Ramblings of a Bipolar Mess

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.

Scientists Credit Ice Bucket Challenge With Exciting ALS Breakthrough

We now finally have something that we can build a therapeutic strategy [with] for people with ALS,” Phillip Wong, a researcher at Johns Hopkins University, says in the video below, just before a bucket of ice water was dumped on his head.

We all remember how last summer the ALS Ice Bucket Challenge had people all over the world, including celebrities, dumping buckets of freezing water on themselves and donating money to fight the progressive neurodegenerative disease, amyotrophic lateral sclerosis, better know as ALS or Lou Gehrig’s disease.

The awareness and fundraising campaign was wildly successful, with the ALS Foundation raising more than $100 million in just 30 days last summer, whereas in the past they’d only raised a fraction of that ($2.8 million) in the same time period, according to an ALS Association press release.

Now, a new study, published by Johns Hopkins researchers last week, credits the Ice Bucket Challenge with helping them make a big breakthrough in the quest for treatment and a cure, BBC News reported. Specifically, there’s now a better understanding a protein called TDP-43, which is dysfunctional in 97 percent of cases of ALS, according to a post the researchers put on Reddit.

Wong and fellow researcher Jonathan Ling explain in the video below how the scientific community has spent a decade trying to better understand this particular protein. Now, they may have finally figured it out thanks to the extra funding that came from the Ice Bucket Challenge. The viral campaign came at a critical time and helped facilitate this discovery, they say.

Understanding TDP-43 better could mean great things for future ALS patients.

The best part is it (the malfunction of the protein) can be fixed,” Ling says in the video below. “So with any luck, this could lead to the possibility of a cure or at least a slowing down of this terrible disease.”

Watch the excited researchers explain their discovery below, right before participating in the Ice Bucket Challenge: 

Check out the full report in the Science Journal here or read this AMA on Reddit for more information.

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