… from the bungalow


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Some thoughts on the R-word and what you can do

The R-Word

Today I read an article on The Good Men Project titled “I Challenged a Famous Ethicist… And Changed His Mind.” As I left my comment on the post thanking Kari Wagner-Peck for taking a stance against the R-word, I wondered if I should mention that I also have a son with an intellectual disability.

Why even consider it? Would it lend credibility to my comment? Worse, would it diminish the sincerity of my gratitude because her actions indirectly benefit me and my son? I opted to leave it out in favor of brevity.

But it left me wondering… If I didn’t have The Little Professor, would I care about the R-word so much?

I’d like to believe that I’d take a stance against it even if I didn’t have a personal stake in it. It takes character to stand up for others even when there’s no obvious personal investment. The thing is, there’s always personal investment when the well-being of others is involved. We’re all connected.

Is this an altruistic stance? Technically speaking.

Is it self-serving? To an extent, sure.

Is it the right thing to do? Absolutely.

What You Can Do

Spread the Word to End the Word is a collaborative effort between Special Olympics and Best Buddies to “raise the consciousness of society about the dehumanizing and hurtful effects of the R-word and encourage people to pledge to stop using the R-word” (Murphy & Schatz, 2013). If you choose to do so, you may pledge your support as I did.

Peace, love, and understanding.


Chris

Reference

Murphy, M. & Schatz, H. (2013). Spread the Word to End the Word Fact Sheet. Retrieved from http://www.r-word.org/r-word-resources.aspx/


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12 days that amaze, Day 8: The most difficult thing

This is the eighth (we’ll call the beard poll #7) of 12 “amazing” installments of “12 days that amaze.” I am pushing myself to write 12 posts about things that amaze me leading up to the St. Baldrick’s Foundation fundraiser in Chicago that Karin, Deb and I are participating in. In doing so, I must also be open to the everyday amazing things that happen around me.


I didn’t have a great day yesterday. I figured I’d miss a day out of my 12-day series at some point. Frankly, I’m impressed that I made it halfway through before dropping the ball. So I asked you for your suggestions on Facebook.

There were a few good ones, but I’m going to take the very first one, submitted by Lynda: “What’s the hardest thing you’ve ever done on purpose?” Easy.

Deciding to have children

My first wife and I got engaged very quickly, and married very young. We both worked for the University of Michigan in Ann Arbor and bought our first house in Ypsilanti, MI. By the time she was finishing up her master’s degree at EMU, I was itching for something more. I got bored. I started to feel like my life was incomplete and lacking in purpose. Sure, we could have adopted a dog, but I had always wanted kids, and even looked forward to being a stay-at-home dad. It was something we talked about before we got married, and I was feeling ready.

We mulled it over for a few weeks. We thought about it, talked about it… We even made a list of pros and cons sitting in a booth at a diner over many cups of coffee. In the end, the pros outweighed the cons (by a narrow margin) and we decided to ditch the birth control.

Fast forward about four months. We were eating out one night (I want to say it was Bennigan’s) and she threw up in the parking lot after dinner. That night, she took a pregnancy test, and it was positive. That was a happy, tearful night, equal parts exciting and terrifying.

The very next day, she was laid off. Within 18 hours of finding out we were going to have our first baby, more than half of our income was cut. F*ck me. I was able to find a better paying job that was drivable from where her parents live, and we moved to be closer to family. We knew we’d need help. What we didn’t know was the extent to which that would be true.

We read the books and knew what to expect (or so we thought). The pregnancy was, for the most part, a breeze for her. When it was time for him to be born, he was in a breech position, and her amniotic fluid was low, so they performed a C-section. There were no other complications, and there he was.

Then everything changed. Continue reading


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12 days that amaze, Day 2: My singing, dancing, robot son

This is the second of 12 amazing installments of “12 days that amaze” I am pushing myself to write 12 posts about things that amaze me leading up to the St. Baldrick’s Foundation fundraiser in Chicago that Karin, Deb and I are participating in. In doing so, I must also be open to the everyday amazing things that happen around me.


I’ve written about my oldest son a few times before. When I started blogging, I wasn’t sure how much I’d talk about raising a son with special needs, but I thought it would be more than I do. The revealing implication of the fact that I don’t often write about it is that I don’t dwell on the challenges of special needs parenting. That’s not to slight anyone who does. But while his challenges aren’t minor, they’re far less severe than those of other children I’ve met or read about. I also try to focus on the good things in life. That’s not always easy to do, except (surprisingly) when it comes to my Little Professor.

Even though I hate the fact that he lives with a disability, I’ve accepted the Little Professor for who he is. Beyond that, I’ve embraced it, for the most part. You can read all about that here. So any new skill that he starts to develop is a major accomplishment in our “family ecosystem,” as my ex-wife and her husband have coined it.

The Little Professor's leg in a cast, adorning a reflective slap bracelet courtesy of goguiltypleasures.com.

The Little Professor's leg in a cast, adorning a reflective slap bracelet courtesy of goguiltypleasures.com.

The Little Professor broke his leg a couple of months ago, and his motor skills are lacking as it is, so recovery has been slow and arduous. He’s now limping on his “bad” leg, but he wouldn’t put an ounce of weight on it when he got his cast off two weeks ago. He also has no real speech. He can say “yeah” and that’s about it. So to hear him “sing” is truly, literally, music to my ears.

The Little Professor has started Continue reading


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FtB Update: A week (or two) in review

It’s been a crazy couple of weeks. Since I haven’t made the time yet to write a new post, I wanted to do a quick recap. First, Blissfully Bald* was Freshly Pressed and had over 26k views. (I do hope to respond to everyone’s comments!) Then my son broke his leg. It took us a few days to get a wheel chair since he’s not coordinated enough to make safe use of crutches. (That’s all he needs; a fractured ulna to match his fractured tibia.) It took a few more days to get a ramp for the front of the house. (Thank you, United Cerebral Palsy of Metropolitan Detroit!!) Next, I recorded a podcast version of “Blissfully Bald” as an experiment. (Your feedback on that would be helpful!)

I was feeling pretty down after my son broke his leg, so I posed this humble request to everyone on the Facebook page:

Seeing as how I was away from work yesterday tending to my boy’s broken leg on one of my busiest days of the year, I’ll be disconnecting from Facebook as soon as I post this. In the meantime, could you all do me a favor? I’ve been feeling pretty lousy about the whole thing…

Please share something you’re grateful for!

For me, gratitude goes a long way, and I loved it when you shared your “Happiness is…” statements! Thanks in advance. I’m looking forward to reading these later! Also, there’s a chance I’ll use some of them in a blog post at the end of the week, so only participate if you don’t mind my doing so.

Christine: I hope your son heals quickly, FTB!!! As far as your request of what I’m grateful for:
I’m grateful for finally understanding and knowing what unconditional love is. And that I get it from my husband and my children.

Chris T: I’m grateful that I’m raising a seemingly well adjusted child. Its amazing considering who her father is!

Maegan: Hope the kiddo gets better fast. And the stress settles. I’m grateful for coffee (starting cup 2 shortly), the fact the Dude still naps and for the fact i don’t have to go to the store today. 🙂

The Hands Free Revolution: Sending healing thoughts you way. So sorry for what you and your family have endured. I am grateful that I have re-discovered life’s simple joys — expressions on my children’s faces, in the miracles of nature, in the unending love of my spouse, in other people’s stories of strength and triumph.

Michelle L: i’m grateful for big brothers who help teach you that sometimes shit just happens, and you cant always have control, but that does not make it your fault, and when bad shit happens there is always a life lesson to be learned. and sometimes that lesson is that run-on sentences are the debil~
♥ you Chris, it’ll be ok /hugz  (<–my baby sister)

Sarah: I am grateful for the love of my life partner who takes my hand and walks me through the hard times with any questions and helping me find something to laugh about each and every day.

Karin Z: When I put my head to the pillow while I snuggle my kids to bed, I am grateful for them 😉 and it makes me smile.

Michelle S: I’m grateful for the friends and family that love me in spite of myself sometimes. 🙂

Mary: I’m grateful that my son trusted me enough to tell me the truth!

Karin A: I am grateful for you, Chris. ♥ (<– my spouse)

Karin A: Oh, and cheese. And popcorn. Movies, sunshine, the ocean, hot chocolate, Lucas, perspective…so much to be grateful for!

Vicki: This week I am concentrating on being grateful for the little things in life such as…a surprise Starbucks delivery from the hubby, my children’s laughter, a HOT shower, camera phones, a fluffy pillow, warm boots, a phone call from a friend!

Amanda: I’m grateful for Chinese finger traps, sea monkeys, quarter machines, freshly laundered area rugs! And that I’ve finally embraced and love “my weird” 🙂 It’s so peaceful when you stop fighting against your true self and just go with the flow!

Karin A: I love your weird, too, Amanda. ♥

I am grateful for real-life friends and family who not only make life easier, but make this world a warmer place. I am grateful for medical insurance that helps pay for hospital visits and wheelchairs. I am grateful for the folks at Apria Healthcare for their efforts to get my son the equipment he needed despite some vague wording from a doctor. I am grateful for a loaner ramp from UCP-Detroit and for the friend of a friend–who doesn’t know me from Adam–who referred me to the QuickRamps for Kids program. AND I am grateful for YOU, my online friends. When I need a quick pick-me-up, all I have to do is visit some of my favorite pages or ask you folks for a little help. Your responses (above) helped a bunch. Thank you for that.

I am also grateful for humor in the midst of difficult times.

Is there anything in particular you’re grateful for today? Please share in the comments! As always, thanks for reading, commenting, and sharing. It means a lot!

*Update regarding the fundraiser: We met our goal of $1,000 in a week! So we’ve updated the goal to $2,500 and we’re over halfway there! Take a look for yourself!

Join the conversation on Twitter and Facebook!


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Pooping Rainbows: Not Just for Fools and Space Cats

Viper Top Gun "sunshine up your ass"

"Now I'm not gonna sit here and blow sunshine up your ass, Lieutenant."

Ever been accused of blowing sunshine up someone’s ass*? I haven’t yet, at least not to my face. But I feel like it’s only a matter of time. I sometimes hesitate to share thoughts and articles pertaining to joy and love and other such hippie-esque virtues because of what appears to be an overpopulation of online naysayers and trolls.

It seems that in this microcosm of electronic communication and semi-anonymity that we call the interwebz, cynicism has become the increasingly popular stance to take. (Not being friendly is much easier to do when you’re not standing eye-to-eye with someone.) Now, I do love me some good sarcasm here and there. Oh, you’re being sarcastic? I get it. Very funny. And witty. Congratulations. How’s that working for you? But as a Facebook/blogging friend (TMiYC) put it, “I used to be a huge fan of sarcasm. Now I prefer direct, honest human connection.” Exactly.

I often feel like positive thinking is being asked to take a back seat. Inspiration has gotten a bum rap. Not everything intended to be inspiring on the Internet is “blowing sunshine up your ass” or “shitting rainbows**.” It’s about GRATITUDE, one of the most powerful emotions we can experience. What’s more: it’s something we can choose to feel. How great is that?!

Nyan Cat

Nyan.Cat: Rocketing through space on a never-ending supply of rainbow ass-fuel since April, 2011.

So why does it seem like so many people Continue reading


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Take Care of Each Other, Goddammit: A simple, three-step guide to maintaining your sanity (Blogger Idol Week 8)

[This was my post for Week 8 of Blogger Idol. The assignment was to get on our soapboxes and write about something we feel passionately about. The original post was shared over 160 times on Facebook, received hundreds of views and received a perfect judges’ score.
Enjoy the post.]

Two-thirds of my immediate family live in another state. Three-fifths of my mom’s immediate family are deceased. I have a few friends, but most of us have moved to different towns. So when I do need help, it feels like asking too much of the few people who would be in a position to offer it, and that’s only if I suck up my pride long enough to consider asking for it. I wrote a post on this subject a few months ago called Where’s My Village?. I admitted to more than I really wanted to in that post, but for me it was worth it.

But why is that? Am I afraid of appearing weak or incapable? Why should I have so much pride? I know I’m not alone in this kind of behavior. We don’t want to be the runt of the litter, we don’t want to burden others, people have their own lives to worry about, etc.

Wait, did I really just say that? Their “own lives”? This is part of the problem. As a society, we have become increasingly independent and proud, but independence can turn into isolation. We want to be seen as strong, like we’ve “got our shit together,” but people sometimes lose their shit. And, usually, no one even sees it coming.

Ben Barnhard-AP

An undated photo provided by the Barnhard family shows Ben Barnhard. (AP Photo/Barnhard Family)

I’ve read two articles in the past handful of days about parents of kids with special needs killing their child. Murdered. And I wasn’t seeking out these articles. They just came across my desk, as it were. The first one, which I talked about in Tragedy in Maryland, was a murder-suicide. This psychiatrist and single parent to a boy with ASD couldn’t handle life anymore and decided to spare her son the trauma of losing his mother to suicide. The second article I read was about a man who decided just a few days ago to decapitate his 7-year-old son who had cerebral palsy, then left is dismembered body at the curb for garbage pick-up. Continue reading


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Tragedy in Maryland

I read an article today that just about wrecked me. I considered for a moment sharing it on the wall of my Facebook page, but decided it deserved more attention than that. This touches on two topics that are very important to me: special needs and suicide.

This is obviously not a reporting blog, so I’m not going to report on this article so much as share it, along with some of my thoughts, and hope to open a dialogue. The headline of The Huffington Post’s August 8, 2011, article read, “Margaret Jensvold, Maryland Mom Who Killed Son Ben Barnhard, Agonized Over School Costs.” You can read the article here.

Ben Barnhard

An undated photo provided by the Barnhard family shows Ben Barnhard. (AP Photo/Barnhard Family)

This is devastating. The divorced mom, a psychiatrist, was completely overwhelmed emotionally and financially while caring for her son with special needs. The school she placed him in cost around $50,000 per year. Apparently mired in despair, she wrote a note about being unable to handle the education system, and that she wanted to spare her son the lifelong trauma of losing a parent to suicide. She then shot her son in the head, then killed herself.

That last sentence makes me feel ill. Typing it felt wrong. This is not a reflection of judgment. This is my reaction as a parent of a child with special needs. Without judgment, then, and in the interest of self-awareness, here are my thoughts:

Firstly, logic (in my mind) does not allow for this outcome. The thought of taking my own life, if I were to entertain such a thought, is immediately thwarted by the thought of my children’s lives. If I were to then think of taking their lives (my fingers are resisting even typing this right now) in order to “spare” them from the trauma of losing their dad, I’m pretty sure I’d immediately throw up. And since I wouldn’t put them through the trauma of losing their dad, nothing would happen. It’s as simple as an “if, then, else” statement. Value=false.

However, I’m also not going to sit here and condemn her, not that I’m justifying in any way what she did. But I cannot even fathom the extent of her despair to not only consider that the death of her son and herself was the only option, but to actually act on it. It’s unimaginable, and it’s beyond tragic.

As difficult as things get with my own special little guy, there is nothing–nothing–that would bring me to that place. OK, that part sounds a bit like a judgment, but it’s my personal stance, and I’ll stand by it.

What are your thoughts about/reactions to this?

~ Chris

P.S. If you or someone you know is struggling with depression and thoughts of suicide, please visit the National Suicide Prevention Lifeline or call 1-800-273-TALK.