Writing about life, motherhood, disability advocacy and more.

10 Years and a Harry Potter Birthday

Monday, February 27, 2017

When this girl was in 2nd grade they had a day where the teachers assigned them a fictional character name for the day. Well her teacher was obsessed (obvi) with Harry Potter and therefore she gave all her students a Harry Potter character to embody for the day. This excellent daughter of mine was chosen...

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Special Needs Spotlight || Koko

Friday, February 24, 2017

Holly and Joe are parents to Kokoro, who is a cheeky, happy, musical 18-month-old with a great sense of humour. Kokoro, or Koko, has CHARGE syndrome, which is one of those unexplained spontaneous genetic mutations that occur at conception and result in a range of health issues. For Koko, this means hearing and vision impairment,...

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Carol AnnFebruary 27, 2017 - 6:57 am
I love your story. ReplyCancel
AnonymousMarch 22, 2017 - 11:51 pm
Although I find this story and child to be amazing, I also feel like if she doesnt want people to speak of her child or ask questions, don't post to a social media account. There will be many with questions and comments and if youre not ready to answer, dont be so open to the public.ReplyCancel
- MigonMarch 23, 2017 - 12:26 am
  Anon,
  
  Well, I think you may have misunderstood. Most people really don't understand what it's like to constantly be on the receiving end of questions about your child's health/general personhood unless you're in our shoes. It can be exhausting. But more than that, it's a matter of politeness and appropriate behavior for a child vs. appropriate behavior for an adult. While I have always advocated that it's OK to ask questions, I generally mean questions coming from small children. Children are naturally curious and we want to help them understand differences so that as they grow up they won't be fearful or feel like people with disabilities are "other." Adults asking questions out of the clear blue about our child's medical history is usually inappropriate. Now if I've been chatting with a mom for a while at the playground and something comes up and then she askes a question about my daughter, that feels a lot different than an adult coming up out of the clear blue and saying "Hey, what happened to her arm?" It's a matter of appropriateness and being polite. People with disabilities don't owe anyone an explanation.
  
  And I see absolutely no conflict with her desire for people in public to maintain approproate boundries while still having a social media account. Those actually go hand in hand to me. Like me, she's trying to educate people about disability and one of those ways is simply having her daughter be present in the same way other familes with typical kids are "present" on social media. We WANT to be seen, because the more we're seen on line, the less strange (and the less rude interactions) it is to be seen in the real world. I hope that makes sense. ReplyCancel
Holly et KokoApril 30, 2017 - 12:16 am
Hi miggy, I think you've captured what I meant exactly. It's just I guess that it's about how you ask questions. It's the difference of saying "oh wow, is that a hearing aid? Is it helpful?" Versus "what's wrong with her?" – similarly I wouldn't say to someone wearing a headscarf "do you have cancer or something?" – which I imagine the person who wrote that comment wouldn't either. Before I had a child with disabilities I really wouldn't have imagined anyone speaking to anyone like that, but gave been shocked to discover the number of people who do. So yes, having a social media account is very important to help people understand that when they behave like that it has an impact on a human being- I don't think anyone would mean to make someone feel like all the world sees of them is their differences but when that's the first thing you say to someone, that is what happens. It's necessary to have a public presence so that people realise my daughter is a human being, not a diagnosis. ReplyCancel
Garima PalMay 11, 2017 - 6:08 am
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Favorite Shows Featuring Disabilities

Wednesday, February 22, 2017

Recently one of my favorite shows, Switched at Birth, returned from a long hiatus for it’s final season. It’s a show that has a lot to do with the deaf community and has been really eye opening for me. I thought I’d do a quick round up of some of my favorite shows and movies...

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heidiFebruary 23, 2017 - 4:02 am
my left foot is excellent and i also really like the elephant man. both required a lot of tissues and WEEKS of reflection. ReplyCancel
- MigonFebruary 23, 2017 - 3:02 pm
  Yes I want to see both of those. ReplyCancel
AWTFebruary 23, 2017 - 4:48 am
"I can't think of a movie that features an actor with a disability"

Gabrielle! It's a French Canadian movie and the main character is played by an actress with Williams Syndrome. And of course The Station Agent, which is one of my favorite movies ever, stars Peter Dinklage.

My Left Foot is excellent. And Speechless is the best thing to happen to TV for a while.ReplyCancel
- MigonFebruary 23, 2017 - 3:05 pm
  Good to know! I'll check it out! And yes there are quite a few movies featuring people with Dwarfism, but not often in a respectful way (The Wizzard of Oz for example…although the sentimental child in me loves that movie)…so I left many of those out. However, Peter Dinklage is a fantastic actor and I'd love to check out The Station Agent. ReplyCancel
BarbFebruary 23, 2017 - 6:42 am
Love Speechless- great portrayal, great casting, and maybe most importantly, it's funny!

I loved the portrayal of autism in Max Braverman in Parenthood- that rang really true for me and our experience. ReplyCancel
- MigonFebruary 23, 2017 - 2:52 pm
  Yes! Max Braverman…. I too loved Parenthood. Should have gone on the list. ReplyCancel
IsaacFebruary 24, 2017 - 2:10 am
Speechless is my favorite! I laugh to the point of crying becauese I am that mom too!ReplyCancel
ToreyFebruary 24, 2017 - 6:59 am
The actor who played Walter White's son in Breaking Bad actually has CP in real life. While the show is pretty dark and not really about disabilities, he was a terrific actor.ReplyCancel
May!February 24, 2017 - 4:31 pm
I watched Life Goes On growing up. I didn't know about authenticity or that sort of thing at the time, but I liked Chris Burke as Corky, and the show started opening my eyes to the portrayal/perception of those with special needs in our society.

Whenever I hear of an actor playing a disabled person in a movie, I automatically think, "Oscar bait," and often it's hard not to see the performance as just a performance instead of letting it transport me to the experience of the disabled person, which I would so much prefer. And need to see more of.

I have to check out all the shows you listed. I immediately thought of you when I first heard about Speechless. I've always wanted to see Temple Grandin. Cheesy or not, I should also see Switched at Birth, because I think Marlee Matlin is one of the bad-assiest ladies around.ReplyCancel

Special Needs Spotlight || Ryder

Friday, February 17, 2017

Hello All! I am Meghan. Mama of Ryder (almost 5!) & Gunner (2), and wife of Matt. My husband and I met in high school and got married in 2009 (not really high school sweet hearts, but definitely a typical Midwestern love story ). My husband was serving in the Marine Corps at the time...

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AnonymousFebruary 17, 2017 - 6:12 pm
My respect and love for the beautiful family and little Ryder!
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Danielle GFebruary 18, 2017 - 6:36 am
Ryder girl, what a sweet soul, and inspiration. I hope that one day our "special families" will meet. Thanks Meghan for pulling the rears from my eyes! ReplyCancel
Danielle GFebruary 18, 2017 - 6:37 am
And thank you for featuring such a great family with an amazing daughter. ReplyCancel
AnonymousFebruary 20, 2017 - 8:33 pm
It is interesting how when our special needs kids are toddlers or preschool-age, people think our kids are misbehaving and say the rudest things. Now that my daughter with low-functioning autism is 8 years old, we don't get the rude comments anymore because people can tell that she is special needs. But we still get the shameless stares. I have a smorgasbord of responses, the most recent of which was "whaaaaat? whaaaaaat?"ReplyCancel
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Read || On Granting Permission

Thursday, February 16, 2017

I used to watch the show What Not To Wear on TLC. You know, the make-over show with Stacy and Clinton. But saying that it was a “make-over” show implies that it was perhaps shallow and superficial–like the hosts just slapped some fashionable clothes on some unfashionable people and called it good. I don’t think...

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Special Needs Spotlight || Ruby

Friday, February 10, 2017

Hi Everyone! My name is Stephanie and I am married to my highschool sweetheart Daniel. We both went to college together, graduated and then got married. We currently live in Huntersville, NC but plan to move to Denver, CO this summer. I love coffee, consignment/thrift shopping, cooking and Netflix. My hubby is in IT and...

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AnonymousFebruary 10, 2017 - 4:46 pm
Very informative and interesting spotlight! Thank you, Miggy and thank you, Stephanie for enlightening us. ReplyCancel
AnonymousFebruary 13, 2017 - 4:46 pm
I have a close friend who has albinism. Her eyes are affected in the way mentioned in your post. She has been legally blind since early childhood. As a result she received O&M training all thru public school and is a proficient cane traveler. A few years ago she opted to use a guide dog. She just got married and other than not being able to drive lives a very typical life. ReplyCancel
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Read || Opportunity + Other Lessson from Alt

Wednesday, February 8, 2017

On a recent trip with my brother he talked about getting himself out of trouble and onto a good path in his life. He told me, “I can say one thing for sure, I have taken every opportunity that has ever come my way.” That has stuck with me and became a bit of a...

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