Wednesday, December 7, 2016

Video: How and When to Talk to Your Kids About Their Disability


If you are a parent of a child with a disability and are wondering how and when to talk about it with your child, check out this episode of The Unexceptional Moms podcast.  My sister, Tara, and I joined hosts Ellen Stumbo and Erin Lorraine to answer this great question.

If you have a disability, how and when were you told about it?  Is disability discussed in your family?  If you are a parent, what have you told your child or children about theirs?  Will you do anything differently now that you have seen the podcast?

Monday, December 5, 2016

10 Things About The Holidays and Me (and CP)

1.  I love making out Christmas cards in early December, with holiday music playing (haven't gotten there yet this year...oops!)

2.  Snow is so pretty...but my CP does not love it.  It makes a lot of things harder.  Like walking, keeping my balance and flexibility.

3.  I love candy canes.

4.  Family time is the best.

5. Christmas movie I must watch every year?  A Christmas Story.

6.  Favorite random gift?  Christmas cookies!

7.  We have two Christmas trees, and only one ornament: Big Bird.  He is the star of any tree.

8.  My favorite Christmas song is O Holy Night.

9.  My favorite person to sing Christmas songs with?  Definitely my cousin.  If you are close to me, you know which one I mean, and you know why... :)

10.  My favorite decorations are:

[Image is: Santa on the far left, dressed all cozily for winter, Christmas Cheer in the middle (a glass jar of red, green and gold jingle bells decorated with a white ribbon.  Far right is a close up of the tag on the Christmas Cheer: At a time when we should feel the most blessed The holidays can make us feel quite stressed.  When you feel the "crabbies" coming near, Sprinkle yourself with Christmas Cheer!!! (Sprinkle on others as needed)]
What are your favorite (or least favorite) things about the holidays?

Monday, November 28, 2016

Lessons Learned From My Community

I have not always felt a part of the disability community.  (This is strange to say, especially given that I have a twin sister who also has CP.)  Particularly, when I was younger, I found it hard to connect with other kids like me.  Early on, as a kindergartener, I had exactly one friend who was like me.  Then there was a long void until I was a teenager.  Then an even longer void until my 30's when I truly began to find "my people."  I wanted to share some lessons I have learned from friends in the disability community:

1.  Support For Each Other Is Vital:

From the time we were very little, my sister and I had the shared experience of having CP together. Having someone by my side who knows what it's like was crucial, whether I was a baby or a 10-year-old about to have my casts removed.  Having each other reduced isolation and anxiety during and after big events like surgeries.  Just having her there during those tough times, and knowing she understood, made a world of difference.

[Image is: Me, age 10, lying on a table about to have my casts removed.  Tara is seated near my head, holding my hand.  We are smiling.]
2.  Our Lives Have Purpose:

I was thirteen and at summer camp for the first time when I met a girl who would quickly become my best friend.  I don't remember the context of the conversation, but I do remember her telling me that "I believe I was put on this earth for a purpose and I'm going to serve it."  Those are powerful words at any age, but hearing them as a teenager was especially important.  The idea that people with disabilities had purpose was new, and life-changing for me.

3.  Our Words Have Power:

That same week, all the girls in my cabin were camping out in a tent.  One of them was going on about how much she loved someone or another.  I said, "You're hopeless...  I meant it in the way people say, "You're a hopeless romantic."  Lightly.  But being thirteen, I didn't deliver the expression right, and the result was instant.  We went from just having fun to the conversation stopping cold as she demanded, "Who said I was hopeless?  I am not hopeless."  I sheepishly admitted it was me.   It was the first time I remember genuinely taking responsibility for something I'd said that hurt someone.  I apologized: "I didn't mean it that way.  I'm sorry."

4.  We Need Role Models:

When Tara and I were babies, we were regular 2-pound trailblazers.  According to our aunt, the hospital where we were had never saved babies our size....until they saved us.  We were the first.  There were no adults with CP when we were growing up because they either had not survived infancy or (more likely) they were institutionalized, which was still common practice when we were born.  That said, the chance to be a role model for kids in college, for teenagers, even for kids with CP has been pretty incredible.  I know it would have been beyond powerful to see an adult with CP who was happy and fulfilled when I was growing up.  A role model with CP can mean the difference between a child hating their disability and realizing they are not alone.

5. We Need Friends With Shared Experiences

This final lesson echoes the first.  One of the most difficult parts of being disabled was being surrounded by people who weren't like me, and feeling like the only one.  It has been so validating to be able to connect with friends who have disabilities, or parents of kids with disabilities.  When we talk, there is an ease I haven't experienced nearly enough in my life.  We just connect.  We don't have to try or search for things to talk about.  We are not left feeling inferior because our hobbies are not active ones.  We are just with our people.  Enough as we are.

What lessons have you learned from your community?

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Monday, November 21, 2016

Let's Talk About Speechless 1x07 "T-H-A-THANKSGIVING"

Hey, guys, I'm back this week.  (Thanks, to Tara for guest posting last week!)  If you missed the announcement on my Facebook page on Halloween, I have spent this month fully dedicated to National Novel Writing Month.  Novel #13 is more involved - and longer - than any of my others have ever been.  I've reached the word count goal and hope to finish the story itself in December.

Looking forward to spending Thanksgiving with my family this week, and that being said, we need to talk a little about Speechless last week:

[Image is: a cartoon turkey looking startled]
Jimmy's brother, Billy, and his family are coming to town for Thanksgiving.  They have an array of annoying habits - a cousin who says one annoying catch phrase, Billy who brags about money constantly.  But under the umbrella of "annoying habits" is also the ableism by JJ's aunt and grandmother.  (His aunt cries and tells the family how "brave" they are, and talks to JJ like he can't hear.)  Grandma dances inappropriately for him, heedless of JJ's discomfort.

Maya decides to make a game out of the family's annoying quirks.  Each takes a family member (while Ray abstains, cooking with Kenneth in the kitchen to avoid family drama) and they are awarded points whenever their family member does the annoying thing they hate most.  It turns out that Billy (a dentist) is struggling financially, and the heavy-handed "lesson" of the episode is that "everyone struggles."

JJ was not really in the episode much, except to be danced for by Grandma.  He pretends he likes it this year, so that he can get more points in the family game.  But truth time?  All I could think of was a member of the disabled community who recently shared they were the unwilling recipient of a lap dance, and the whole thing got treated as a joke, even when they reported it.  I think this walks a dangerous line.

In the end, in order to recoup money he has lost, Billy trots JJ out for one of his commercials as honest to God inspiration porn.  So that Billy's audience can see that he is "real" and has a "real disabled nephew."

So, yeah, not the best episode for me.  But I am glad to be back!

What did you think of Speechless last week?  Let me know in the comments?

Monday, November 14, 2016

Let's Talk About Speechless 1x06 'D-A-T-E--DATE" (A Guest Post by Tara)

Hi everyone!  I’m Tonia’s sister, Tara.  She was so kind as to allow me to review last week’s episode of Speechless, “"D-a-t-e-Date?"

[Image is: Several red hearts with black outlines floating in the air]


Overall, I have really been enjoying this series.  And this episode was no exception.  

This week, JJ meets an injured gymnast.  He immediately notices and disapproves of her red parking placard, signifying her temporary disability.  Kenneth urges JJ to give the girl a chance as he is simultaneously implored by a teacher to show his fellow disabled student around.  At this point in the show, I’ll admit, I was cringing.  (And JJ was too!)  The whole “disabled people only date/marry other disabled people” trope is super tired.  That said, the storyline played out fairly well.  JJ ends up getting to know Gymnast Girl while confronting his own insecurities, and the episode ended with him asking her to watch a movie with him.  She accepts genuinely.  

I was super happy to see JJ with a personal storyline this week, instead of a storyline that focused solely on accessibility like we’ve seen in the past.  However, I will say that the therapy scene tread on some thin ice as far as inspiration porn.  

We see Gymnast Girl stand for the first time, after being encouraged and inspired by JJ.  

Do disabled people draw strength from each other?  Absolutely.  The scene does have merit.  However, as Gymnast Girl is essentially an injured able-bodied person, having her draw inspiration from JJ - a permanently disabled character - just feels a little gross.

Other highlights?  

Dylan gets in trouble at school for destroying a participation trophy.  I enjoyed seeing Jimmy guide her through appropriate coping strategies.  (I would love to see JJ and Jimmy bond at some point - have we seen this yet?)


What did you think of last week’s episode?  Sound off in the comments!  

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Connect with Tara here


Monday, November 7, 2016

Let's Talk About Absentee Voting

It was a toss-up determining what was better news that day: that the heat in our building was turned on, or that we got our absentee ballots in the mail.

Recently, a friend asked: Honest question, is there a benefit to absentee voting?

Since we have lived in accessible housing, we have voted three times.  The first time, back in 2008, Tara and I bundled up against the chilly Midwestern November and walked/rolled to our polling place.  The line was long and afterward, we had to brave the cold again just to get home.  In 2012, walking was not an option, so we asked our dad for a ride.  He dropped us at a local church this time where we waited....and waited....and waited...and finally voted and had to call him again to give us a ride back.

This year was the first where absentee voting did not require a reason, and so Tara and I jumped at the chance to go online and fill out the basic information required.  A week later the ballots arrived, along with serious instructions and three envelopes.  We voted.  We were witnesses for each other, and the next day Tara dropped them off at our local post office on her way to work.

Today, I checked the status of my ballot, and saw this:

[Image is: a screen shot which reads ABSENTEE BALLOT STATUS  You have applied for an absentee ballot or you are a registered voter in a mail ballot precinct for the November 8, 2016 State General Election.  November 8, 2016, State General Election:  Your ballot was accepted on October 17, 2016 and will be counted.] 

Sending in my absentee ballot just made sense.  It saved our energy and it saved our family a couple of car trips to drop us off and pick us up. I think it's a pretty great option, and really makes the voting process easier.

This year's vote is super important.  If you are unsure where you stand, I recommend this quiz, which really helped me clarify my position.

Have you sent in your absentee ballot?  Will you be at your local polling place tomorrow? Will this be your first time voting in a presidential election?  Let me know in the comments.

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Monday, October 31, 2016

Let's Talk About Speechless 1x05 H-A-L--HALLOWEEN

This week, on Speechless, Dad, Jimmy, reveals his one true talent: designing family costumes around JJ's wheelchair.

[Image is: Lovely orange pumpkins.]
Though I had a wheelchair by the Halloween I was 8, I never used it to trick-or-treat.  I always used my walker instead.  And though I had great costumes, my favorite was a rather simple robot costume, because I felt that my walker added to it, rather than detracted from it.  So I would have been all about any costume that integrated my adaptive equipment, but I never really got to explore that.

The last year I ever trick-or-treated, I was only 10 years old.  Where I lived, the infamous 1991 Halloween blizzard was already dumping snow on my home state but my sister, my brothers and I all still wanted to trick-or-treat.  We wore winter gear over our costumes, and my dad carried me to every house.  (Thanks, Dad!)  

Needless to say, I can't exactly relate to the notion of family Halloween costumes that seamlessly incorporate a wheelchair.  Definitely by the time I was the age of the DiMeo kids, Halloween traditions were long past (and no wonder!  All that trudging through a blizzard carrying a 10-year-old!)  So I was right with them when they made their own plans for the night rather than dressing up in Jimmy's family costume of the year.

JJ wants to go to a party with friends, and basically invites himself over.  (Sometimes, you have to be proactive!)  His friends say of course he can come, they just weren't sure if he would be able to.  He and Kenneth arrive (I'm honestly not sure how JJ gets into the house) and JJ asks for beer.  Kenneth is sure he has misspelled "soda" but JJ insists.  Finally, he starts asking Kenneth for random things, and asking the kids at the party to give him beer in the moments Kenneth is not around.  He gets drunk and ends up "slurring his words" as he tries to spell.

Maya and Jimmy punish him (for the first time!)  JJ laughs as he is lectured and Maya is relived that "at least he's a happy drunk!"  Ray and Dylan (whose Halloween plans have also gone awry) need help from Mom and Dad respectively, and then lament the fact that it's Halloween and they haven't had any candy.  Jimmy says he knows where they can get some, and they dress up in their family Back to the Future costumes (with Kenneth as Stevie Wonder) and try trick-or-treating at 1:45 AM.  (I guess JJ's grounding does not officially start until the following day, as he is magically well enough to happily drive the DeLorean costume into the night...)

I liked how this episode showed that JJ is a typical teenager.  I really liked how he used his laser pointer to get at Ray when he was angry, and also to get the attention of kids at the party.  (You use what you've got!")  All in all, a pretty strong episode!

Did you watch the Halloween episode of Speechless?  What did you think?

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