When My Son’s ‘Star Wars’ Obsession Led to the Happiest Surprise


Last April, my son, Colin, had a new “obsession,” and it was all things “Star Wars.” I’d been down this road before, and my husband and I were counting our lucky stars that “Elmo’s World” had left the building. He began with “A New Hope,” “Empire” and “Jedi” (as he should). Then he wanted books.  He read and read. What parent would put a stop to that? Literacy and quiet? Win. Then it happened…

He read the words, “Jedi are forbidden to marry.” This is a huge problem for a 7-year-old who has mapped out his entire life. He wanted to spend his days protecting the galaxy, then come home to his wife and younglings. He had midichlorians to pass on, after all! This was his first major life decision, and he was struggling.

I cared, really, but after hearing about it all day every day… let’s just say I was having some pretty Dark-Sided feelings of my own. I handed him a piece of paper and a pen. Then I told him to tell it to George Lucas. He wrote the following:

The letter reads: Dear George Lucas, I don’t like that a Jedi cannot get married. I want to get married without becoming a Sith. Please change the rule. P.S. I want to come to Skywalker Ranch please. Love Colin

My annoyance disappeared because, come on… this is adorable. As promised, I sent it off to Lucasfilm. George Lucas sold Lucasfilm and therefore would not be answering the letter himself, but I was hoping for a form letter that might satisfy my young Padawan. What we got was a bit more. Along with a bunch of toys and books, he received this letter:

The letter reads: Hello Colin, Thank you so much for writing to us with your question. It sounds like the Force is strong with you, and you are showing great wisdom by asking your question. To be a Jedi is to truly know the value of friendship, of compassion, and of loyalty, and these are values important in a marriage. The Sith think inward, only of themselves. When you find someone that you can connect to in a selfless way, then you are on the path of the light, and the dark side will not take hold of you. With this goodness in your heart, you can be married. We enclosed a few gifts that we hope you enjoy. Thank you again for writing to us. May the Force Be With You! Sincerely, Your Friends at Lucasfilm

Let me tell you, when a “Star Wars” fan opens their mailbox and sees a package from Lucasfilm, the video camera comes out. This is the result.

Months went by without incident. (OK, maybe there were a few lightsaber injuries during that time, but not much else.)  Then one day, the phone rings, and it’s the head of PR for Lucasfilm. They still had Colin’s letter, and they wanted to talk to the New York Times about it. (The Times was doing a story on fan mail.) We chatted for a bit, and I mentioned I made a video of Colin and his dad opening the package, and I could put it on YouTube for the staff to see. The following day, the New York Times called to interview me, and I did my best to pretend I was doing something more exciting than scrubbing the toilets at the time.

The Times article was set to come out on a Friday, and on Thursday, a friend asked if he could share the story with a few bloggers. In the time between saying yes and the Times article coming out, my child’s wish to journey the galaxy was quickly becoming a reality. Hundreds of publications covered his story. We even ended up doing a few local news shows.

Now, all the news was not good. As in the wonderful world of “Star Wars,” there is a Dark Side. I was being hounded by companies asking me to sell the rights to the video. My Facebook page was hacked for pictures, interviews were posted that were completely fabricated and let’s just say that some science fiction fans do not like their favorite stories messed with. I considered taking it all down. Then my friend, Mike, alerted me to something he saw while following the story on reddit. It was this comment:

“I’m beaten down by life, fairly hopelessly, battling away at incorporeal enemies like health, bills, and depression, so much of me detached from the smaller and simpler person I once was. I’ve buried a hundred versions of myself in a graveyard of my mind.

And yet here I sit, tired and sick and not even sure if I’ll make it to The Force Awakens, and a two-minute video of a child getting dollar store-level merchandize in a nondescript brown envelope punches through the veneer of adulthood and brings me all the way down to his level… and for just a single minute I’m mindlessly happy again. It’s Christmastime and I remember how great it felt.”

I sat there for a moment. When that video created a life of its own and took off, I never considered it anything other than my child’s 15 minutes of fame. I got more and more comments like this one, and I realized this meant much more to me than just being our flash in the pan.

When Colin was diagnosed with autism, I was afraid the autism was all the world would see. No one would ever see him as I see him. No one would notice his constant state of wonder and enthusiasm for life, but there it was. Colin’s autism wasn’t included in the launch of this story.  It was all about him, and he was making the world smile. Someone once told me someday I would Google my name and the results would show, “Mother of Colin” — and it does.

If the most noteworthy thing I ever do is to raise a child who sets his sights on changing the galaxy, then I think I can call myself wildly successful. Although, the job may never be done.  After all, someday there may be grandchildren.

Follow this journey on RaisingJedi.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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Why I’m Not Grateful to My Husband for ‘Taking Me On’


“… Do you mean to tell me that you met your husband after you got sick? [Insert surprised face.] You weren’t already married? Wow! He’s a brave man for taking you on! You must be so grateful to him.”

I’m really not.

I’m grateful for a lot of things in my life.

Being grateful to my husband for “taking me on” definitely isn’t one of them.

Last week I came across a story by Holly Bonner on The Mighty, “Why I’m Not Grateful To My Husband For Staying After I Lost My Eyesight.”

Holly explored the notion that she’s supposed to be grateful her husband stayed with her after she went blind… and the reasons why she isn’tIt was a thought-provoking story that stirred up similar feelings for me, but for slightly different reasons.

I don’t get the “grateful for staying with you” comments; I get the “grateful he took you on” comments.

I didn’t get sick during the course of our marriage. I was already living with chronic illness and disability when my husband met me.

I have a disability, but our relationship doesn’t. My husband and I have been together for over eight years and just celebrated our fifth wedding anniversary.

He knew about my disability and health challenges from the moment he met me. The walking sticks and wheelchair were hard to miss.

I know he was taken aback the first time he saw me being pushed in the wheelchair — it can be confronting to see a young person like that — but it didn’t deter him.

He was told of the complications that come with my managing my condition. His response was a simple, yet profound, “So what?”

Not a “So what? Who cares?” response but an “It’s cool babe, we’ve got this,” response.

He sees me for all the things that make me who I am, from the frustrating to the wonderful. With creativity, strategy and communication, we can experience the world to the fullest together.

People with disabilities can date and be in relationships just like anyone else.

Everyone has talents, interests, insecurities, passions, limitations and the ability to love and be loved. A person with a disability is no different.

Unfortunately, social stigma and negative stereotypes around disability and romantic relationships make it a challenging path to navigate.

Why is it so hard to fathom that people with physical disabilities want to, and can be, in a romantic relationship just as much as an able-bodied person? And why, oh why, should I be eternally grateful that someone decided to enter into a relationship with me, much less marry me, simply because I have a disability?

I’m not some charity case that my husband decided to “take on” as a pet project. He didn’t “take me on” in a gesture of noble sacrifice or to explore lofty aspirations of inspiring benevolence in others.

Neither my husband nor I have ever lowered our expectations of our ideal partner or settled when it comes to relationships. Ours is a relationship between two people who love each other. Just like millions of other unions around the world.

In some ways I understand the fear behind romancing someone with a disability. It’s a fear fueled by common misconceptions such as:

  • The partner without the disability will end up being a caregiver more than an equal partner.
  • Disability is a weakness, not a sign of strength.
  • With disability comes an extreme burden.

Sadly, this misinformation can prevent a person from experiencing the most amazing relationship or being able to see the beauty that lies in someone else’s relationship without passing judgment.

Having a disability shouldn’t be a deterrent to an emotional connection with someone.

To enter into a relationship with anyone requires taking a risk and giving that person a chance. Sure, a disability may bring forth different challenges, but that doesn’t mean the person, or the relationship, is any less worthy of your time, love and attention.

I’m not damaged because I have a disability. I live an extraordinarily full and satisfying life. I have a career, loving family, a good social network and am highly independent.

Yes, I require some help from my husband, but it’s not a dependency arrangement. Like any relationship, there is a natural ebb and flow where we take it in turns to help and support each other as needed.

Give and take. Love and support. Laughter and sadness. Highs and lows. One special person to annoy for the rest of my (our) life. That is what I am grateful for.

Take that on!

A version of this post originally appeared on Starbrite Warrior.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

How Adele Helps Me With My Sensory Overload


The way music can impact those with and without autism is amazing. One person I’d like to highlight today is Adele, who’s been breaking records for her new hit song, “Hello.” Adele has been a huge influence on me to find my “place of Zen” whenever I feel overwhelmed in my life.

But first, let me backtrack a bit on how this came about…

When I was growing up, my parents believed in music and theater therapy to see me develop after I was diagnosed with autism at age 4. I was introduced to music at a young age as a way to relieve some of my sensory issues. Growing up in a large city, I was always overwhelmed with cop sirens, horns and other sound pollution in my area. That’s when my parents tried introducing me to music, and for some odd reason, no matter how loud the music was, it was therapeutic and soothing to me.

When I first started getting internships and found my first full-time job, I traveled into New York every single day. It was the first time I used public transportation, and I was stressed about the transition for a while. One big thing that helped whenever I felt an overload coming on was listening to as much R&B music as I could — music that was soothing and helped me find a calm place.

But when I heard Adele’s “Rolling in The Deep” for the first time, things seemed to click like never before in the past.

Her music was just different from the norm, and it was incredible.

When I needed to unwind, Adele’s songs were there. I could listen to them on low or high, and no matter what I was feeling at that time, I was able to find my balance. My transformation — from a kid who hid under couches because of any sound that made me feel uneasy to now — has made me so grateful for people like Adele.

Now that Adele is releasing more new music, I hope I will be able to share my story of why music therapy is so important and recommend artists like Adele for our community to enjoy. It’s become a therapeutic part of my life that I hope everyone can find in their lives, too.

If Adele ever reads this, I’d just like to thank her for helping me find my balance. It’s helped me become the person I am today.

A version of this story originally appeared on Kerrymagro.com.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Adele’s “Hello” video on YouTube

The Cases For and Against This Major Mental Health Bill


Update — November 5, 2015: The House Energy and Commerce Health Subcommittee voted to advance the “Helping Families in Mental Health Crisis Act.” 

While few people in the mental health community would disagree our nation needs a major mental health system makeover, there are varying opinions about how this should be done. Rep. Tim Murphy’s “Helping Families in Mental Health Crisis Act” has gotten the most buzz — and after being reintroduced this summer, the House Energy and Commerce Subcommittee on Health started marking up the bill Tuesday, getting it ready for a vote. Currently the bill has 161 cosponsors.

Here’s some information from those who support the bill, those who are against it and those who want to see something passed but think Murphy’s bill has room for improvement. This is a highlight reel — you can read the bill in full here.

The case for the bill:  

1. Supporters argue the bill focuses on getting help for the seriously mentally ill and prevents “wasteful” spending by the Substance Abuse and Mental Health Services Administration (SAMHSA).

DJ By tightening funding criteria for mental health programs and moving responsibility for mental health care and funding under an Assistant Secretary for Mental Health and Substance Abuse Treatment within the Department of Health and Human Services, this bill reins in the power of SAMHSA — a federal organization that spends over a billion dollars on mental health programming, which it’s been accused of spending frivolously.

“The Helping Families in Mental Health Crisis Act is the first bill in many years with provisions that help the seriously ill. It starts to end federal funding of pop psychology, pseudo-science and antipsychiatry. It replaces mission-creep with a dose of mission control. It sends the seriously ill to treatment, rather than jails shelters, prisons and morgues.” — D.J. Jaffe, founder of MentalIllnessPolicy.org

2. Clarification of HIPAA laws will give caregivers more access to information. 

LS This bill would modify the Health Insurance Portability and Accountability Act (HIPAA), which deals with patients’ rights to health information privacy. As HIPAA is currently interpreted, parents and other caregivers of adults with serious mental illness have had difficulty accessing important information, which restricts participation by family members in their loved ones’ care. This clarification enables caregivers to receive usually protected health information when a mental health care provider believes this kind of disclosure is necessary to help a patient.

“Mental illness is the only illness that has an age limit for care. Treatment is hard to come by at any age, but once a person turns 18, the options diminish entirely and family members no longer have a say in their loved ones’ care. Our nation has traded hospitals for jail cells, we have traded compassionate care for the cold harsh elements of the streets, and our current laws have tied the hands of parents and caregivers. But somehow we have managed to convince ourselves that these options are better than treatment, that somehow criminalizing a person with a diagnosable illness preserves their ‘patient rights.’ We are pleading with members of Congress to pass HR-2646, The Helping Families in Mental Health Crisis Act as it is written.” — Leisl Stoufer, mother of a child with a mental illness.

3. It incentives states for creating Assisted Outpatient Treatment laws.

TAC In arguably one of the most controversial parts of the bill, states would be rewarded a 2 percent increase in their general mental health/substance abuse funding from the government when they implement Assisted Outpatient Treatment (AOT) laws — meaning states can require individuals with a diagnosed mental illness to take anti-psychotic medication if that medication has proven to help them in the past, if they have a history of violence or repeated hospitalizations. Organizations like National Alliance of Mental Illness who support AOT see it as a “last resort.”

“The US Department of Justice has deemed AOT to be an evidence-based practice for reducing crime and violence. Multiple studies have found that AOT reduces incarceration, homelessness and hospitalization and helps people regain dignity and control of their lives. Independent research also has found that AOT can save sufficient taxpayer money to expand other mental health services with the savings. The majority of patients who have utilized AOT say it helped them; many credit AOT with saving their lives.” — Treatment Advocacy Center

 4. It adjusts Medicaid and Medicare to expand mental health coverage.

WP To prevent states from re-opening large psychiatric hospitals, the government refused to allow Medicare and Medicaid payments to larger-than-16-bed facilities. Murphy’s bill would repeal the exclusion as long as a facility kept patients less than 30 days. The bill will also stop Medicaid coverage from prohibiting payment for a same-day mental health service and physical health service.

“Championed by Rep. Tim Murphy (R-Pa.), [the bill] would start by reforming the way Medicaid treats mental-health care, making it easier to reimburse hospitals for treatment and removing a rule blocking payment for mental and physical health care delivered on the same day.” — “The Washington Post” editorial board, in support of the bill.

What others would like to see changed: 

1. The bills shifts too extremely in the other direction, leaving out people who are in recovery.  

SBC Scott Bryant-Comstock, president of the Children’s Mental Health Network, argues while those with serious mental illness need more access to treatment, this bill shifts federally priority too far into intensive services, leaving services unbalanced in the other direction.

“What continues to get lost in the debate about the Murphy bill is that the two ends of the continuum of services for individuals with serious mental illness need each other. It would be unwise just to focus on increasing psychiatric beds and forcing treatment, just as it would be unwise just to focus on recovery. The fact is that there will be times when an individual needs services of the highest intensity. But to only focus on the most intensive services, while at the same time deriding the recovery movement that is there waiting to embrace the individual with serious mental illness and welcome them back into the community, is just plain foolish.” — Scott Bryant-Comstock, president of the Children’s Mental Health Network.

2. Gutting SAMSHA is hurtful, not helpful.

DRJ Some critics have said the new position (an Assistant Secretary for Mental Health and Substance Abuse Treatment) will micro-manage SAMSHA. They’re afraid putting a limiting criteria on SAMSHA’s funding will stop programs that provide important resources for the community as a whole.

“Want to run an advocacy program? Forget it. Want to sponsor a conference? Forget it.” — Dr. John Grohol, founder of Psych Central

3. The language of the bill doesn’t speak to the idea that recovery is possible. 

SC2 Bryant-Comstock also argued the language of the bill leaves out the idea of hope, going so far as to say it “takes us back in time.”

“This bill abandons the language of ‘hope’ and retreats to an earlier time in our history, where we only spoke in the language of ‘disorder.’ It would be a shame to see the progress made to de-stigmatize language and provide a sense of hope to those with mental illness wiped away with the stroke of a pen.” — Scott Bryant-Comstock, president of the Children’s Mental Health Network.

4. Some critics argue the bill takes away rights of those who are mentally ill. 

CE Some who oppose the bill argue encouraging states to enforce Assisted Outpatient Treatment laws infiltrates on the rights of individuals with mental illness, who would in some cases be prevented from refusing treatment. Christian Exoo, a blogger for “Mad in America,” called the changes to HIPAA “discriminatory,” claiming it will reduce the privacy rights of individuals with mental illnesses and discourage them from seeking treatment.

“The Helping Families in Mental Health Crisis Act would expand outpatient commitment laws, curbing the civil rights of millions of Americans. That expansion is predicated on the assumptions that the mentally ill are more likely to engage in violence than the general population, and that forced medication will reduce this violence.” — Christian Exoo, blogger for Mad in America.

​This only scratches of surface. If you’re interested in learning more about what mental health advocates have to say about the bill, here are some resources:

-Statement from Mental Health America 

-Letter from major mental health groups encouraging Congress to act.

-The best case for the bill can be found on MentalIllnessPolicy.org.

-The best case against the bill, on the Children’s Mental Health Network blog.

“Here is the little secret about ‘divisiveness’ between mental health advocates that politicians don’t want you to know. When you get advocates in a room together, away from the political spotlight, more often than not, they are in agreement about the need for a spectrum of mental health supports and services, not one end of the continuum versus the other. We need federal mental health reform legislation to reflect that same continuum approach at the state, tribal and local level.” — Scott Bryant-Comstock

 What do you think? Tell us in the comments below. 

How a Little Boy on the Bus Helped Me Overcome My Anxiety


I was sitting on a Greyhound bus going from Florida to Pennsylvania. From the moment the bus departed, I started having mini panic attacks. My body refused to relax, and I was unable to stop the scary thoughts that were constantly swirling in my brain. Minutes felt like hours; hours felt like days. After a few hours passed, I was certain we had to at least be somewhat close to Pennsylvania.

“Welcome to Alabama”

“I’m going to die here,” I thought to myself.

Knowing we had only reached Alabama was unsettling. I felt like I had nothing left. My strength was gone, I felt like crying and I felt completely alone.

We stopped at a massive bus station in downtown Alabama. I could barely drag my trembling body inside, but I found a way. I had no money, so food was out of the equation. I started panicking so much the people around must have noticed.

I found an attendant and asked where the closest hospital was. He informed me there was a fire station across the street.

The firemen looked at me, heard my horror story and immediately checked my blood sugar and monitored my blood pressure. They must not have been too concerned, because they gave me a Coke and a hamburger and told me to have a safe trip home.

As I made my way back to the bus, I noticed there were significantly more people boarding than before. More people watching me having a panic attack was not ideal. There were coats and luggage all around, but I found my seat amongst the herd. As I felt my world closing in around me, my anxiety skyrocketed.

At this point, most of the passengers were asleep, except for one. There was a little boy, maybe 6 or 7 years old, sitting across the aisle from me.

“Hello,” he said.

“Hi buddy, how are you doing?”

“I’m going to my mom’s house. She lives very far away.”

“That’s cool. Do you like riding on the bus?”

“I don’t know. My mom is waiting for me.”

“I don’t like the bus very much. I can’t sleep.”

“I’m gonna stay awake the whole time so I can see my mommy.”

We talked sporadically for a few more minutes. I got up to go to the bathroom, and when I returned to my seat he was sleeping. As I sat back down I realized the entire time we were talking, I didn’t feel an ounce of anxiety.

The little boy was the only person willing to talk to me, and it came at the best time imaginable. Before we spoke I was at my worst, like my total collapse was just around the corner. He entered my life, and the conversation we had was just enough to take my mind off myself.

When he fell asleep I was truly sad. His excitement was genuine, and he possessed an innocence that, for most of the trip, I had lost. As we crossed over the final state border on our journey, I glanced outside and was not immediately overwhelmed with fear. I looked back over at the little boy, who was sleeping on his grandfather’s shoulder, and quietly said, “Thank you.” He did more for me than any adult I encountered on that trip.

Little did he know for most of that bus ride, I wanted to see my mommy, too.

When the School’s Response to My Son Eloping Was ‘This Happens’


“Hello?”

“Mrs. Mallard,” said the voice on the other end, “we just wanted to inform you that Elijah got out of the classroom today. He made several attempts to escape, and he finally succeeded. It took us about 30 minutes, but we finally found him in a yard nearby. The lady who lived there kept him for us until we got there. We just wanted to let you know.” Elijah, my son, is an autistic boy. He is nonverbal.

These are the most terrifying moments.

Elijah has a habit of eloping. For a young couple, eloping is a happy occasion, a spontaneous act in a time of unabashed love or maybe to spite a parent. But for a parent whose child has special needs, eloping is a word that can bring fear and hopelessness. This is doubly true for me because my son seldom responds to his name (not unlike any other teenager who is preoccupied). He also loves water and will not hesitate to go toward it when he is compelled, even though he can’t swim.

In a controlled environment, eloping is less likely to occur. I trust that at his school, Elijah is in a controlled environment. There are more than two pairs of eyes in the room, and normally they’re attentive to him and will place him in time-out. But on this day, his supervisors failed him. Not only that, but they failed me by not contacting me in a reasonable time so I could help look for my child. Why wasn’t he given a time-out after the first attempt? How was he missing for so long that he was able to escape to a neighbor’s home up the road? But even more frightening, how is it that he ended up in the home of a stranger?!

When I asked these questions, I was shocked at the reply.

“This happens from time to time, and the neighbors are familiar with our kids. He’s fine.”

This indicates that these instances happen so often, the neighbors in the community are aware of it. The fact that there was a 30-minute timespan means the supervisors didn’t notice him missing for at least two to three minutes. So many things can happen in a short period of time. Thank God it didn’t.

Needless to say, I have not had that issue again. I discussed my concerns at length with the teachers and principal and told them I would not hesitate to take further actions if it happened again.

As his mother, I am his strongest advocate and will continue to fight for his safety. Never feel you are helpless to stand up for the safety of your child. It could mean life or death.

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