Thursday, December 14, 2017

Special Needs Spotlight || Frankie

My name is Sarah and I live in Brisbane, Australia with my partner Jonathan and our two kids, Frankie (4) and Evie (11). Jonathan and I have spent the last 22 years together. Looking back, work, travel and living overseas all kind of happened without too much drama. I was working as a nurse in Melbourne when I fell pregnant with Evie, and we decided to move back to Brisbane to be closer to our families. It was not until we had Frankie four years ago that our life took an unexpected turn, and the rabbit-hole, roller-coaster business began.

Frankie was diagnosed with Angelman Syndrome (AS) which is a neuro-genetic disorder that causes physical and intellectual disability, when he was 12 months old. A year later, when we were just coming to terms with his AS diagnosis and our new Special Needs life, he acquired a severe brain injury from a seizure. The brain injury affected his vision, mobility and ability to swallow. So he is pretty much fully dependent on us to do everything for him now, being tube fed and immobile. Since recovering from the acute after-effects of the brain injury and returning home from hospital he has remained quite stable and seizure free. Although physically he has not made many improvements, he has managed to adapt to his deficits and new reality in the best way possible. Frankie is pretty much all sweetness these days, and it doesn't take much to keep him happy and relaxed. He is a zen master, and we love being around him.


Miggy: Hi Sarah and welcome. Thank you so much for being here today and sharing your beautiful family with us. First, can you take me back to when you first found out something was "wrong" with Frankie? Was it before birth, shortly after or sometime after that? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Sarah: When Frankie was born we didn't think there was anything wrong, he looked perfect. Even the Obstetrician commented when he first arrived on "what a fine specimen" he was. He did have trouble feeding and was very unsettled, with amazingly long periods of uncontrolled crying. We had him checked out and were told that neurologically he was OK. But by the time he was 6 months old we knew that there was something wrong. He had quite significant developmental delay and it was his physiotherapist who first suggested that Frankie might display some of the characteristics of Angelman Syndrome.

He was 12 months old when his Pediatrician carried out the genetic testing for AS and left a message on my voicemail telling me the news of the diagnosis. I was sitting in my car when I first listened to it. Although I'm pretty sure that using voicemail to break bad news is not recommended, I think he actually did me a favour. It hit me pretty hard that day, as I had already researched AS on the Internet and had absorbed enough grim facts to think our lives were over. I remember feeling completely devastated and picking Jonathan up from work and telling him, bawling. There was a real sense of grief at the loss of the life that we had imagined for him. There was a lot of guilt too. The intellectual disability was probably the hardest element for me. I didn't know what that would mean for him, or how we would relate to each other as a family. All the unknowns were pretty scary.

I don't think we had much time to be sad though, there was too much to do and Evie needed us to keep it together. We adjusted because we didn't have much choice and life went on, and we didn't come apart at the seams. Evie was being a trooper and friends and family kept us going. Then Frankie sustained his brain injury and it all got even harder. Despite everything life went on though, friends and family stepped in again. We had an amazing amount of support.

If you'd told me when Frankie was first diagnosed what was in store for us, I wouldn't have known what to think. Back then I doubt I would have been able to imagine us having a meaningful life with Frankie, as he is now. It would have sounded too depressing. There are definitely things that we have given up, and that we can't do now. It’s not easy and emotionally it can be quite painful. I know there is no happy ending or cure awaiting us, and logistically as he gets bigger it is only going to get harder to include him in our lives the way we want to. I would have focused on these hard things back then because I wouldn't have known about the positive effect that Frankie was going to have on us, and the way that we would feel about him.

One of my main fears when we first got his diagnosis was that we wouldn’t have a life, or at least the life we wanted. Involving holidays and all the things that you take for granted that will make you happy. I think I was more fixated on wanting, or expecting things to make me happy then. Frankie has made me appreciate what we do have in a way that I realize I never did before. It's more about the people and relationships now. Everything is harder and usually involves a team effort, there are more logistics involved, but we still do stuff and it kind of makes it better when we get there. We even travelled to Canada recently, which felt pretty great. I haven't let my wanting of holidays go yet.

Miggy: Please educate us on Frankie's diagnosis and how it affects his and your family's day-to-day life?

Sarah: Angelman Syndrome (AS) is a neuro-genetic disorder that causes severe physical and intellectual disability, occurring in around 1 in 15,000 people. In most cases, it isn't inherited and the genetic anomaly responsible occurs by chance around conception. It results from the loss of function of the UBE3A gene in the brain. The loss of the enzyme that is produced by this UBE3A gene prevents neurons from functioning correctly, leading to major deficits in learning and memory. Angels, as they're often called, have problems with movement and balance, and develop little or no speech. Around 85% will develop a seizure disorder and most have severe sleep disturbance. They do tend to be quite social and have a happy disposition, which was evident from the beginning with Frankie.

We’re told he was very unlucky to sustain a brain injury from a seizure. He has cortical vision impairment, so his vision is limited but we are still hoping that this will improve over time. He is a bit of a sack of potatoes. He can't sit up, or roll and doesn't have head or neck control. He can move his legs but finds it hard to use his arms, or to hold on to things. He can't swallow food safely as his swallow has been affected, so he is fed via a PEG tube and requires seizure medication. We do everything for him, reposition him and try to keep him comfortable, keep up with his various therapies. He wears AFOs and uses a standing frame, and we try to get him in his pool as much as possible as he appears to love the freedom of movement it gives him. We try to provide him with structure, involving the same people in a weekly routine which helps him to know what's going on. We get him outside for walks and rides in his bike trailer with family as much as possible, and we have some wonderful carers who help out too.

Thankfully Frankie's personality has remained intact. I think it would have been a different story for us if he had lost that. He is a good listener. He listens intently to what's going on around him and seems to recognize familiar sounds, and people he knows by their voices. There are no words, but he vocalizes and communicates with us in his own subtle way. We try to keep him engaged and interacting with us, and involved in what’s going on. So he tends to get wheeled wherever the action is in and around the house, particularly where there are kids. He is the king of appreciation and he never complains, but is definitely happiest when close to you, and being held. Like the rest of us Frankie has distinct moods, but is very sweet and polite. I'm pretty sure he has a fake cough, that he uses occasionally to get our attention. He recently started going to a Special School for the vision impaired one day a week, which he seems to enjoy. So he is a pretty busy kid.

Tuesday, December 12, 2017

Gift Guide || Subscriptions

Tis the season for the gift guides + round ups across the web! I don't know about you, but I love a good gift guide. This year, I thought I'd do a gift guide that focused on things you could subscribe to. I know there are a TON of subscription boxes out there, so I tried to really compile some unique subscriptions that aren't just another box. To be honest I've never done a gift box subscription myself, but I know I'd love to receive something fun in the mail throughout the year. Also, I think this year I'm going to try and get one thing below for each of my kids--my top choices right now are KiwiCrates, Pipsticks and a magazine subscription of some sort. Have you ever gotten a subscription for yourself or someone else? Any favorites I've missed? Enjoy!
starting in upper left corner and going clockwise.

Bravery Magazine / Quarterly print publican for boys and girls that feature strong female role models.
Quarterlane Kids / A curated collection of books chosen for your child.
Graze / Perfectly proportioned, healthy snacks delivered monthly.
PipSticks / The worlds best stickers delivered monthly. I can vouch for these stickers--they are the best!
KawaiiBox /  Receive a box filled with hand-picked Japanese and Korean kawaii (cute) items directly to your home every month.
Kiwi Crates / Monthly science, technology, engineering, art and math subscription boxes for kids.
Sketchbox / Art supplies delivered monthly along with a unique piece of art to help inspire you.

Other awesome kid magazine choices: Brightlight MagazineNational Geographic KidsNational Geographic Little KidsTime for KidsAmerican Girl MagazineRanger Rick and Sports Illustrated kids.

Friday, December 08, 2017

Special Needs Spotlight || Charlotte

Hi! My name is Betsy and I live in Cincinnati, Ohio with my husband Tae and our two wonderful daughters Charlotte (4) and Lillie (2). Tae and I met in college, have been married for six years, and love taking our girls to new places. I’d like to introduce you to Charlotte. She has already faced so many obstacles in her short life, but none of them have stopped her from being the sweetest and happiest little girl. I’m so excited to get to share all about her.


Miggy: Hi Betsy and welcome! Thank you so much for sharing your family's special needs journey, especially your daughter Charlotte. Let's start at the beginning, when did you first know Charlotte had some extra challenges? Was it before birth, shortly after or sometime after that? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Betsy: Charlotte was our first and she couldn’t have been more perfect. Even the sleepless first night in the hospital was a blessing. But by Charlotte’s one week checkup, we noticed a bump on the side of her head. By her one month checkup, we were told she had an asymmetric head shape (Positional Plagiocephaly) and had limited range of motion in her neck (Torticollis). By her two month checkup, Charlotte was seeing a physical therapist for her Torticollis and at four months was outfitted with a helmet to help correct the shape of her skull. When the helmet didn’t help, this persistent mom knew something wasn’t right and insisted the doctor order an X-ray. A few days later, I got a call at work and remember feeling like I had the wind knocked out of me. 

The doctor said Charlotte had Lambdoid Craniosynostosis and casually explained that they would have to remove her skull, reshape it, and put it back on her head during something called Cranio Vault Reconstruction. We also found out Charlotte has Chiari Malformation. My husband and I had trouble digesting that and then having to explain that to our families, let alone pronouncing all of these diagnoses. Once I got over the initial shock, I knew we could get through it. My dad had just passed away from lung cancer the month before and so I was just thankful this was was something the doctors could actually fix. We flew all the way to Dallas to have the surgery done and the recovery went well. Things were going great.

But Charlotte’s challenges continued. She was significantly behind hitting her sitting, crawling, and walking benchmarks. She lacked the coordination and gross and fine motor skills we saw in other children her age. She wasn’t saying any words. She was constantly the new rare case with the pediatrician. By the time she was 3 years old, she had been in physical therapy nearly her entire life and speech therapy for about a year. We got her into preschool on an IEP to augment her therapy sessions and to be introduced into a classroom setting with other children. One day before Christmas break her speech therapist nonchalantly told me that Charlotte might not ever talk. Excuse me? I knew she was behind in speech, but I thought being around kids and seeing speech therapists would catch her up. So, I frantically went home to start Googling and called her pediatrician. Shortly after that, Charlotte was diagnosed with Childhood Apraxia of Speech and Global Development Delay.

Hearing anything is wrong with your baby is never fun. The initial shock was terrifying to say the least. Once I wiped away the tears I realized I am the only one advocating for her and I haven’t looked back since. I don’t listen to doctors or therapists that tell me Charlotte will never be able to do something. I move on to someone who is willing to work with us. Charlotte is a champ and goes through life with a big smile, so I will too.
Miggy: Can you educate us on Charlotte's diagnosis and how they affect her and your family's day-to-day life?

Betsy: Craniosynostosis is when a suture (soft spot) in the skull has fused too early. It affects around 1 in 2,300 births in the United States. Lambdoid Craniosynostosis involves the sutures along the back of the skull and is extremely rare. Sutures fusing too early causes the skull to compensate and grow in an unusual shape, putting pressure on the growing brain. But after her surgery, all that reminds us of that now is a zig-zag scar and a not so perfectly shaped head – but you would never know with all her hair.

Apraxia is a motor speech disorder that makes it hard for Charlotte to say sounds and words. To explain it to people, I say that Charlotte knows what she wants to say, but her mouth can’t form the words. There is a disconnect between her brain and her mouth that makes it difficult to plan and produce the correct movements of her tongue, lip and jaw. A lot of people confuse this with a speech delay. They think “oh my granddaughter was a late talker so she will start talking any day now too”. The difference is that a delay is when a child’s speech is developing in the appropriate order just at a slower rate. A speech disorder (such as apraxia) is when their speech and language is developing abnormally.

On top of that, Charlotte’s Global Development Delay means that she has delays in gross motor, fine motor, and cognitive areas as well. It takes her much longer, with a lot more work, to master the skills that come easily to others like jumping or kicking a ball.

All of this greatly affects her day-to-day life. She is 4 years old and only has five intelligible words. She babbles constantly. It is getting to the point that kids her age are talking while playing so Charlotte can be left out. So far she has never showed this has bothered her. She is ALWAYS happy and loves everyone. The other issue is obviously frustration with not being able to tell us what she wants and needs. Charlotte now has an augmentative communication device – a fancy way of saying and iPad with a speech app – that lets her tell us what she wants. She LOVES being us to tell us she wants chocolate milk and M&M’s! Charlotte gets physical, occupational, and speech therapy at her school. She also goes to private speech therapy four times a week and when we can fit it into our already packed schedule, physical and occupational therapies.

Monday, December 04, 2017

Make || Easy Homemade Ornaments

This Little Miggy || Easy Homemade Ornaments
If you're looking for a simple, beautiful Christmas craft to do with your kids that will also yield some keepsake ornaments, I've got just the thing for you. And while you may or may not have Sculpy polymer clay on hand (we had some), but either way you can same day ship that business from Amazon and everything else you should definitely have on hand, then you will be up and running in no time. Bam!

This Little Miggy || Easy Homemade Ornaments
oven bake clay
cookie cutters
butter knife or palette knife
wax or parchment paper
rolling pin
cookie sheet

Start by rolling out your clay in between some waxed or parchment paper. You want it about 1/4 inch thick. Then using cookie cutters your kids can cut out the shapes they want--we used our trusty snowflake cookie cutters. You can also cut out simple shapes using your knife. I like the child-like look of the hand cut Christmas tree. Be sure to also cut a small hole in the top for your ribbon to string through. Then place on your baking sheet.
This Little Miggy || Easy Homemade Ornaments
This Little Miggy || Easy Homemade Ornaments

Friday, December 01, 2017

Spotlight Revisited || Elias

Miggy here--today is the LAST DAY to enter my amazing giveaway with Alaska Airlines--4 free round trip vouchers for one amazing special needs family. Check out this post for full details and good luck!

Second, if you love This Little Miggy and the work I do here, including the Special Needs Spotlight series, it would mean a lot to me if you would take a minute and like my FB page and Follow me on Instagram. And of course sharing these posts is always appreciated and one of the best ways you can support me! Lastly, when I don't have a new spotlight I like to feature one from the archives. I've got some great spotlights in the works, but until then please enjoy this one of sweet Elias. I got to meet him in person and spend some time with his mama after I did this spotlight and I'm telling you, the love and joy between these two is magic. Enjoy Original spotlight here


My name is Emma and I have three children, Livia, 13 years old, Leo, 11 years old, and Elias, 9 years old. My husband's name is Stephen and we've been married for almost 16 years. Wow! Time flies when you're having fun! We live a little north of Cincinnati, and we've lived here for ten years. I grew up in Sweden, but Stephen is from here. Together, we have lived in both our countries. Livia and Leo were born in Sweden, and Elias was born here.

Elias was diagnosed with krabbe disease when he was 8 months old. Krabbe is very rare, I don't expect that you've heard of it before, I sure hadn't until Elias was diagnosed. Krabbe is a degenerative, neurological, genetic disease that affects the white matter of the brain, and the nervous system. Based on his age at the time of onset, and how fast the disease was progressing, we were told that he wouldn't live past his second birthday. We were devastated. It took me a while to identify as a "special needs mom." Children with special needs were nothing new to me. I started working as an 18 year old at a respite home for children with disabilities, and I also have family members with special needs. I was so focused on his limited time here on earth, and the fact that he developed normally for the first five months, I didn't see him as having special needs. I saw him as terminally ill, and I was fighting an impossible war, trying to keep him alive. Eventually things settled down, and I realized that now I was one of them, a special needs mom. I often wondered what it would be like to be one of the mothers, whose children I was taking care of, and now I know! Let me tell you, it’s not what I expected. There is nothing that makes me more proud than pushing Elias’s wheelchair, and being his, and Livia and Leo’s mom!


Miggy: Hi Emma, thank you so much for being here today and talking about your son Elias and your special needs journey. First, can you take me back to when you first knew Elias would have special needs? What were the initial signs and symptoms and how long did it take you to get a diagnosis? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Emma: The moment that pops into mind, is when his PT wanted to try Elias in a wheelchair. He was about 7 months at the time, and this is before we had a diagnosis. I was so confused. I remember asking the PT, "He's only 7 months old, he's not supposed to be walking yet. Why does he need a wheelchair?" She was obviously more experienced than me, and she knew that whatever was causing his recent delays, would affect him for the rest of his life. She explained that he needed something that would support his core better than a regular stroller, whether he would be able to walk, or not in the future. At that moment it all sank in. Elias would never walk, and I was so worried about what other problems might show up.

Looking back at that moment, little did I know that things were about to get a lot worse. Elias was perfectly healthy as a newborn. The first few months were great, as we settled into our lives with 3 children. When Elias was about 5 months old, his development slowed down, and his muscles seemed weak. I made an appointment with our pediatrician, and thankfully she took my concerns seriously right away. She said he had hypotonia, low muscle tone, and sent us to PT. The PT knew right away that something was very wrong, she referred us to neurology. It took about 2 months before we finally got to see the neurologist. During that time, Elias's symptoms had become even worse. He was regressing. Things that he used to do, he was not able to do anymore. It was such a scary time of our lives, and nothing could have prepared me for what was to come. The neurologist talked to us for about an hour, and he had a very concerned look on his face. He told us that he thought Elias had one of the leukodystrophies. You're probably thinking "leuko... what??" And so were we. He explained that it's a disease that affects the white matter of the brain, there's no cure or treatment, and he said it was very serious. When he said the word "serious", it felt like a death sentence had been placed on my son. I was bawling. We had to come back for more testing to decide which leukodystrophy Elias had, and by now everything was moving quickly. A few weeks later we were told that Elias had krabbe, he was about 8 months old at the time. In some ways I felt relieved to have a diagnosis, but at the same time I so wished for another diagnosis. I had never heard of such a horrible disease before and I felt devastated, it hurt to breathe. My perfectly beautiful son was going to regress to a state of a newborn, loose the control of his muscles, loose his ability to eat, suffer seizures, lose the ability to laugh and smile, become blind and deaf, and then pass away before the age of two. It was too much to bear. The only consolation at the time, were my three children. They kept me going and they kept me strong. Children are resilient and they don’t slow down. I had to get up every morning and try my best to keep up with them.

I feel very different now, compared to when Elias was younger. Life has slowed down, and I guess I feel a lot more hopeful. I know I can’t change the outcome of krabbe, one day I will lose Elias, but I try not to let that take over our lives. Elias is here right now, and he is very much alive. I feel so thankful that I get to spend every day with him, and I don’t want to ruin his short life with my own grief. I want him to feel loved, I want him to be comfortable, I want him to learn things, I want him to play and have fun, I want him to have friends, and thankfully, many of the things that I want for him, we have been able to accomplish. Actually living with a child with krabbe is very different than reading about it in some medical publication. They fail to tell you about the love that is stronger than anything, and they don’t tell you about the sweet moments that will stay with you forever. And Elias is not in a “vegetative state”, and he’s not blind or deaf either!
Miggy: Elias has been diagnosed with krabbe disease. Can you educate us about Krabbe disease and explain how Elias's needs affect your day-to-day life?

Emma: Krabbe is caused by an enzyme deficiency. The enzyme is called GALC, and it’s supposed to break down toxins that muscles produce when we move. The toxins remain in the body and they start breaking down the myelin sheet that surrounds nerves and the brain. The onset of krabbe can happen at different times, depending on how much enzyme you were born with. This is why Elias didn’t have any symptoms at first, he had enough enzyme to develop normally for the first few months. The most common form is early infantile. The first symptoms for these babies are irritability and feeding issues. Krabbe is very rare, 1 out of 100,000 are affected. It’s genetic, both parents have to be carriers. There’s a 25% risk with each pregnancy that the child will have krabbe.

Elias’s needs affect everything we do. He’s in a wheelchair and he can’t move much. He has a feeding tube, and he’s on a vent, but he doesn’t have a trach, we use a bi-pap mask instead. We use a CPT vest, cough assist and suctioning machine several times a day, to help keep his lungs clear. Since he can’t move, we have to help him with everything from dressing him, to playing with him. We move his arms and legs to prevent his muscles from becoming stiff, and we use foot braces and hand splints. He takes a lot of medicines, four times a day. We are constantly monitoring him for seizures. And then there’s all the appointments… Sometimes I feel like we get nothing done around here, but reading this back to myself, I can see why! It all takes a lot of time! We have night nurses every night so that we can sleep. We used to have day time nursing as well, but I went to nursing school to get my LPN degree, and now I work as his nurse. Even with all of this stuff, we try, as much as we can, to go about our day like anyone else. Elias goes to school two days a week, and he also gets home instruction. In the fall he joined a baseball league, and we’re planning on signing him up for the spring session, it was so much fun! Family time is very important to us, and we all love getting out of the house. We always enjoy visiting the zoo, going to the park, taking walks around the neighborhood, going to the movies, visiting the museum, hanging out with friends and family. Thankfully we have a modified van, which makes our outings so much easier!

Wednesday, November 29, 2017

My Thoughts on Wonder

We had a fantastic Thanksgiving weekend that consisted of a lot of food and a lot of sleeping in. A huge win in my book. Over the weekend we also saw the new movie Wonder, based on the book of the same name written by RJ Palacio.

I enjoyed the movie, just like I enjoyed the book when I read it several years ago. However, it wasn't without it's flaws, at least from the perspective of the mother of a child with a physical difference. Of course my daughter does not have a cranio facial difference, as the main character, Auggie, in Wonder does, but we know what it's like to live in a world where going out in public is often filled with stares, whispers and pointing. A lot of people asked me on my Instagram stories what I thought about Wonder, here is a longer version of my thoughts.

ps. SPOILERS AHEAD. Read at your own risk.

First, I think it's important to know a little background about how Wonder came to be. Author RJ Palacio does not have a craniofacial difference, and does not have a child with a cranio difference. Rather, she was in an ice cream shop years ago when a little girl with a craniofacial difference came into the shop and Palacio's young son, who was 3 at the time, saw this girl and started crying. Palacio didn't know what to do, so she did what most mother's in this situation do--she got out of there as quickly as she could. To her credit, she realized later that she missed a teaching opportunity and that she should have engaged in a conversation with that young girl and her mom. You can read her full account on her site here.

What I think Wonder gets right:
The staring. The constant attention and how wearing that reality can be. Truthfully, I think the staring and negative attention might be worse for a child with a facial difference, but obviously I don't know for sure. That being said, seeing Auggie walk down the hallways of his school with children craning their necks was one of many moments that brought tears to my eyes. I've seen that scenario in real life many, many times.

Parenting. Just this last year we had that experience of sending our daughter to a new school and the first couple of days we were holding our breath. 7 years into this game we KNOW how children can and usually do react. Auggie's parents knew too. Of course I went and talked to each and every class in Lamp's school, and education is a night and day difference in how she is treated, but watching those parents send Auggie to school and hearing his mom whisper, "Dear God, please make them be nice to him." was a very relatable moment. More watery eyes.

It's not all about Auggie/disability. Auggie's sister Via has her own worries and issues going on. Yes, she talks a great deal about Auggie being the center of the Universe in their family--which is also relatable--but she's lost a best friend, she's falling in love and trying new things like acting. I like that it shows that everyone goes through hard things and it's not all about the disability. Via's former best friend also has her own stuff going on and the point I like about all of this is everybody has hard things in their life. In that sense this movie does not put Auggie on a pity pedestal making him and his differneces the measuring stick for all hard things in their lives.

The kids at school. Other than Julian, most of the kids are rather complex characters who aren't black and white. His friend Jack succumbs to peer pressure and makes fun of Auggie behind his back. It seems a little out of character for Jack, but at the same time it's a realistic portrayal of a good kid in a not-so-great moment. And of course Auggie is hurt by this, but he also accepts his apology and they work it out eventually. Out of all the characters Julian is the least believable in the sense that he's pretty one dimensional. However, the presence of Julian stands to remind us that some people in the world really are that image driven and unfeeling.

What I think Wonder gets wrong:

Using an actor without a cranio facial disorder. There are a couple other things that bother me about Wonder, and I'll list them below, but without a doubt the biggest oversight--and frankly a huge missed opportunity--was using an actor without a craniofacial disorder, for the lead role of Auggie.

This may sound foreign to you if you're hearing this idea for the first time, but for many people in the disability community it is a big problem that non-disabled actors almost always play disabled characters. Not only does it take away already scarce work opportunities for disabled actors, but it is also offensive.

As Ariel Henly, a writer with a craniofacial difference, says, "As someone with a craniofacial condition, I wanted to like the fact that there was going to be a major motion picture about a child with experiences that were meant to be similar to mine. For the first time, I'd be able to see someone like me in a character on the big screen. Like Auggie, I endured numerous surgeries to correct facial disfigurements... Individuals who looked like me, who had conditions like mine, were never written about in books.There weren't children who looked like me anywhere: not on television or in movies. While I wanted to like that Wonder was supposed to tell a story similar to mine, I didn't. Because even though people with craniofacial conditions are often mocked for their appearance, called monsters, and told to remove their "masks," directors decided to cast a generic looking child and have him do just that—wear a mask. "

Along these same lines, we know the importance of women telling women's stories and we know the importance of people of color telling their own stories, yet almost without exception able-bodied people are the ones to tell disabled people's stories. This is kind of a big problem. Since Dustin Hoffman won an Oscar for Rain Man in the late 80's the majority of Best Actor Oscar winners have gone to men playing sick or disabled characters.

As Scott Jordan Harris said in this article for Slate about the movie The Theory of Everything in which Eddie Raymond portrays a physically disabled Stephen Hawking,

"Another Oscar contender, Ava DuVernay’s egregiously under-nominated Selma, burns with authenticity about black experiences because it was made by members of the black community, not by members of the community that has historically oppressed them. In contrast, The Theory of Everything flickers weakly with truisms that can be mistaken for insight only by people who are not disabled, because it was made by—and for—people who are not disabled.

The ultimate ambition of David Oyelowo’s performance as Martin Luther King, Jr. is to express the reality of black life and black history in a way that resonates with those within the black community and educates those outside it. The ultimate ambition of Eddie Redmayne’s performance as Stephen Hawking is to contort his body convincingly enough to make other able-bodied people think “Wow! By the end I really believed he was a cripple!” Our attitudes to disability should have evolved past the stage when this mimicry is considered worthy of our most famous award for acting."

Yeah. As I said, it's a big problem.

Inspiration porn. My last couple of issues with the movie involve things I've talked about before, namely using disabled people as inspiration porn. At the end of the movie Auggie receives an award, which is essentially given to him for being disabled. It was softened slightly by the idea that it was given to the student who has "changed the most hearts," and perhaps that is true, but consider this point of view again from Ariel Henly (this time in Teen Vogue):

"In Wonder, Auggie is used as a prop to teach those around him about acceptance and compassion. The official movie description deems him "the most unlikely of heroes.” But what is he a hero for, exactly? For living with a disfigured face? For not getting angry when he’s subjected to cruel and intense bullying on a daily basis? For going through traumatic medical procedures? You may find someone inspiring for how they handle a certain situation, or the humor they use to cope with adversity, for example. But the existence of someone should not be considered “inspirational,” just because they’re different.

But here's a lesson for everyone: the mere existence of individuals with facial disfigurements or differences is not inspirational. We are so much more than the props we’ve been turned into, designed to make non-disfigured individuals feel better about their lives. Our stories matter and our experiences matter, and to portray our lives and struggles as nothing more than a source of inspiration encouraging those without craniofacial disorders to feel better about themselves, is a great disservice to everyone in the cranio community."

I know. The idea of inspiration porn and the objectifying of the disabled is a bit of a mind-stretcher for us abled-bodied folks. I mean, they gave Auggie an award! Isn't that a good thing? Maybe this all feels a little too PC. Maybe hearing these thoughts from people in the disabled community makes them seem too sensitive. And certainly not all disabled people feel this way. (Although I've read it enough to know that it's definitely a common sentiment.) But I ask you to consider these points of view. Sit with them. 

As a final thought I want to say this: In my instagram stories I said I did like the movie Wonder, and I did. At the heart of it, the movie does what I believe it was intended to do--raise awareness about craniofacial differences and people who look different in general, and to choose kindness. As the mother of a child with physical differences I could relate to the sentiments and experiences that a special needs mother encounters. But I am a special needs mom, not a person with disabilities and that is a big distinction.

Which is why I talked about Palacio not having a craniofacial difference, or being the mother of a child with a craniofacial difference. Because it's important to note that once again, this is a story about disability from the point of view of someone who does not have a disability, nor do they have a close relationship to a person with this specific disability. Does she have the right to write this kind of story? Sure. I actually think she did a pretty good job all things considered.

But that's not really the question we should be asking. The question we should be asking is, if the disabled community were to write their own stories, are we ready to listen? A middle schooler with Cerebral Palsy tried to write a book about a disabled character, but she couldn't get it published because it wasn't "sad enough." Hmmm. Do we want to hear the more nuanced, complicated stories about disabled lives? Or do we want to hear the same old "inspirational" stories over and over again, invoking a false empathy (in other words pity) so that we, the able-bodied majority, can continue to feel better about ourselves?

Here's what I think we need to do better in the future: Rather than holding the lens up to disabled characters like Auggie to see how they react to a world that treats them poorly and then calling them "brave" for not being filled with rage for all the ugliness thrown their way, lets hold up the lens to the rest of the world that shows the lack of exposure to disabled bodies in the world around them (tv, books, media), the lack of education and therefore the lack compassion that leads to exclusion, ridicule and oppression and call it what it is: jacked up. And then we can be ready to hear their real stories.

However, to actually hear their real stories, we're going to need to start telling disabled stories from and with disabled people themselves. There's no other way. 

Tuesday, November 21, 2017

Happy Thanksgiving

This is the first year in a while that we haven't done our gratitude tree. I thought about it, and the girls eventually noticed but it was a little too late... cuz they noticed like yesterday. It's alright. Missing a year one here or there isn't going to bring a whole tradition crashing down. It's not like I cancelled Christmas. But I do find myself needing to take some time to write down or say out loud the things I'm grateful for. Tonight Zuzu was saying our family prayer and she said thanks for being able to look up the weather. It was the sweetest. And so true. I AM grateful to be able to look up the weather! I've been grateful for so many modern conveniences, but have never thought of that one before.

With the new house and an uptick in schedule craziness and an eventual move on the horizon we've got a ton of things that need our attention. Last weekend we had planned to go through some of our storage in the basement, to organize and clean out. But we didn't. We played in the leaves instead.

It was it's own little gratitude practice--watching my kids and my husband play in the leaves, on a perfect fall day, laughing and dancing and jumping and knowing these days won't last forever.

And these little girlies kept doing trust falls off their dad's knee into the leaves. They'd look at him and say, "I trust you" right before letting go and falling back into the leaves. I laughed because I thought it was funny, but also smiled because I know how lucky they are to have their dad. Whether they know it or not, they can trust him.

Happy Thanksgiving all. I hope you have a wonderful holiday surrounded with loved ones and friends. Here are some great last minute Thanksgiving links if you need them!

A fantastic source for the most amazing pies! Cinnamon Chocolate Mousse blew. my. mind.

To brine or not to brine.

How to avoid talking politics at Thanksgiving.

Unless you want to.

If the political talk gets a little uncomfortable, there's always this.

On a related note, hopefully you don't have a one-upper at your dinner. The worst!

Thinking of adding a carrot dish to the Thanksgiving line up. Either  this one or this one. (Both look fancy, but easy to make.)

I really like a pretty Thanksgiving table, but I don't like to stress about it either. I usually forage some greenery from the yard and add some candles.

Here are some other last minute Thanksgiving table scape ideas.

A great, low-key dinner party playlist.

18 Thanksgiving Movies to watch this weekend.

See you next week!