Why the Decision to Blog About Your Special Needs Child Is Never an Easy One

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“Don’t wash your dirty knickers in public.”

My grandmother’s advice is ringing in my ears. I was brought up not to talk openly about private family matters; it was very much frowned upon. That’s why my recent decision to start blogging about my son’s birth brain injury (hypoxic ischemic encephalopathy or HIE) hasn’t been an easy one. 

I’m filled with doubt and questions. Should I really be doing this? What would my son, Leo, want me to do? What will he think if he reads it when he’s older? Which parts of this story are mine to tell and which bits belong to him? 

In the early days just after his birth, I knew there was a risk that any blog would be driven by too much pain, too much raw emotion. I thought of my grandmother’s advice and was afraid to embarrass myself. But the thing that’s always frustrated me is how little people on the outside understand what this journey feels like. How little I understood what it was like until it happened to me.

Leo is now nearly 3 years old, and it feels like the right time to talk. It seems everywhere I go, I’m reminded that it’s something I must do. 

For example, today I took my son to the hospital dentist. As we waited for our turn, the door opened and a woman came out with her adult son. He has cerebral palsy and was in a wheelchair. I could see they looked stressed; they were having some sort of disagreement. “Mum, I can do relationships!” he shouted. Immediately, she started whispering at him to be quiet. I tried to make eye contact, to smile at them. “It’s OK,” I wanted to say to her. “You don’t need to feel awkward in front of me, I am one of you!” But she didn’t see me, and they left.

I know from an outside perspective my child probably doesn’t “look” disabled. You can’t see the scar on his belly from the feeding tube, I don’t carry around the telephone book-sized piles of medical notes we have at home. At first glance, you wouldn’t know the journey we’ve been on and the challenges we face. I feel caught between two worlds – the disabled community and the “typical” one. I don’t know where I fit.

Our culture tells us that disability can be easily spotted – we’re told that all people with cerebral palsy are like this, all people with autism are like that. We assume that disability is fixed, that it’s black and white. It isn’t. Disability can be a changing picture, things can go forwards and back. It’s difficult to put it in a box — it’s complicated and confusing. Perhaps this is why as parents we shrink away from labels. Labels are one way of cutting through the confusion, a short hand to help explain it all, but they don’t really mean much to us. They don’t describe our children.

When I think of my son’s label – HIE – I realize he’s just one small part of a diverse group. In wanting to tell my HIE story I know I can’t possibly encompass it all, I can’t do it justice. There’s no way I can describe what it’s like for everyone who finds themselves with an HIE diagnosis; all I can do is say how it is for us.

As parents of children with disabilities, we must be brave and bring our stories out into the light. It’s only by showing people what it’s really like that they can start to understand. Maybe they aren’t listening, maybe they don’t want to know. But at least if we try, we’re beginning to break down stereotypes and build a world where the word “disabled” doesn’t feel so alien.

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How to Save a Brain

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Leo in hospital “It’s not so difficult to save a life; it’s much harder to save a brain.” That was the response from my son’s pediatrician when I commented on how lucky we were that my son, Leo, was still with us.

Leo, now nearly 3 years old, suffered shoulder dystocia at birth which caused a lack of oxygen to his brain. He was diagnosed with Hypoxic Ischemic Encephalopathy (a brain injury), and we were discharged from hospital with a bleak prognosis. The likelihood of severe disability was extremely high, and we were warned “not to rule out the worst end of the spectrum.” Leo had no suck or swallow and was tube fed through his nose. He didn’t make eye contact or track objects, his movements were a little stiff, his breathing was noisy. We got to grips with his round-the-clock care. We syringed medications and formulas down the tube. We learned how to use the suction machine to stop him from choking on his own drool.

It was a strange time, those first few weeks at home. Friends arrived with home cooked food, belated new baby cards and small gifts they weren’t sure if we wanted. I opened the door to sad faces, people who didn’t know what to say; it was as if someone had died. It was a confusing time, and as parents we were exhausted, shellshocked by all that had happened. Disappointed? Perhaps. Devastated? No. We were numb with grief but felt determined. We were grateful for the opportunity to bring Leo home and for the rehabilitation to begin.

Hypoxic Ischemic Encephalopathy (HIE). I’d never heard of it. It was impossible to pronounce, much harder to understand. So I did what any parent would do, and I Googled it. I learned quickly that as a special needs parent, Google is not your friend. There was little on the Internet that I could find to offer any hope. In desperation, I typed “HIE” into YouTube and a little video came up of a small boy in Australia playing in his backyard. He was moving around, sort of bunny hopping to play with his toys. He looked… happy. I emailed his mother to thank her for the video and for being able to offer a little flicker of hope. To my surprise, she emailed me back. She invited me to join a support group on Facebook. She told me there was a whole community of people who had children with HIE on Facebook from all over the world. She said there was a variety of different outcomes, and no two children were exactly alike, but there was always someone there, any time of day or night to answer my questions and offer support.

I will never forget that euphoric feeling of finding the HIE support forum. People familiar with all the terminology, people who understood. Suddenly I wasn’t alone. There were children and families on there with the full spectrum of outcomes, from a full recovery to severe disability. I asked so many questions in those first frightening few months. I wanted to know what the future held, even though at times it was overwhelming. But they offered me so much hope, they gave me a picture into the future, and it wasn’t so black. They shared photos of little boys with feeding tubes standing tall and proud at a family wedding, little girls rolling on their play mats, smiling and laughing at 3 years old, children in wheelchairs off for their first day of school. I was starting to see that life could and would go on — or as my Australian friend told me: “Things will be all right, you just have to change your definition of ‘all right.’”

Seeking reassurance and advice from other mothers is a natural and normal part of being a parent, but it’s one of the many things you’re robbed of when you have a special needs child. This is simply because it seems no one can relate to the problems you have or the things you’re going through. My aunt is a retired social worker who worked with children with disabilities and their families, and I remember her saying to me in those initial first days how lonely it was going to be. I wonder, though, if we’re the generation that can change that. Even though it’s difficult to get out on the house, even though visitors are thin on the ground and respite care doesn’t seem to exist, we’re not alone. There’s always someone to talk to online.

In the U.K., we couldn’t find a specific charity that offers support to parents of children who have suffered HIE. So as parents on the forum, we’ve decided to start our own, and I’m lucky enough to be a part of it. We’ve just had our first meeting in London. It was amazing to sit across the table from old friends who knew me well, even though we’d never before met. We shared our stories for the first time face-to-face, and I couldn’t hold back the tears. In the real world, I’ve tried so hard to be strong for my son and not break under inhumane level of pressure a birth brain injury puts on the mother. People wonder so often how I cope with it all, but I’m lucky that I’ve found my village online. I realize that in obsessing about how to help save my son’s brain, I’ve found the support of other mothers to help save mine.

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When a Scary Commonality Turned 6 Strangers Into Best Friends

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The drive gave me time to think, to question if this was a good idea.

I was nervous. Six women meeting up. And the only thing we had in common was the brain injury our children experienced at birth.

My husband joked that I was walking into a murder movie plot. That didn’t scare me. My emotions did.

What if we didn’t get along? What if we had nothing in common besides hypoxic-ischemicenc ephalopathy (HIE)? How would I feel about another mom whose kid was doing more than mine developmentally?

The real question: Was the commonality of HIE enough to make a real connection with virtual strangers?

The answer: a resounding yes.

That weekend was filled with the best mix of laughter and tears. We shared stories and fears. We laughed constantly. We didn’t sleep much because we packed that weekend full. We immediately bonded in a way I never imagined.

More than a year and a half later, the women I met at that cozy Michigan chalet are my lifeline.

They’re the people I turn to when I feel overwhelmed with therapies and diagnoses and the never ending what ifs. They get my life. Best of all, they get me.

Our lives are not the same. We have different backgrounds. Different family structures. Different ideologies.

And our kids are different. Some can walk. Some can’t. Some can eat. Some can’t.

But when it comes down to it. It doesn’t matter.

We’re the support each of us was looking for when we entered this crazy world of HIE and special needs parenting.

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I love my friends I had before HIE. They’ve supported me and been there for me.

But there are times I feel like an outsider.

When they talk about milestones and typical parent problems — potty training, getting their kids to eat their veggies, having alone time — I don’t have a lot to say. They can’t understand HIE, and I don’t want them to.

That’s why I need my fellow HIE moms.

When one of our kids is getting ready for a medical procedure or their yearly IEP, these moms the ones who say: “You got this.”

When I’m feeling down about the “what if” and “why me,” they build me back up.

They know what it feels like to love your child with all your heart but wish that life could be different.

So when Drew sits for six seconds with minimal support, I cheer! Even though my daughter hasn’t yet.

Or when Max takes his first steps, my eyes well with tears, and I proudly watch that video five times in a row. Even though my daughter can’t.

When Kaden’s mom worries about his progress at school, I listen and encourage her. It doesn’t matter where Emma measures against his progress. I’m there for my friend because I care about her.

And when Alex has a hospital stay due to a bug my daughter can more easily fight off, I know his mother sees my “get well” wishes for what they really are — love and support. She doesn’t push them aside because I have a child who isn’t as medically fragile.

HIE affects every child differently. But we’re all in this together.

We crave support and understanding. The feeling I get when I see, talk to or text with these women is my comfort.

Since our first meeting, we’ve gotten together three more times — once with our kids, once with about 20 other awesome moms and once to celebrate a new baby soon to enter our families.

Each meetup is filled with laughter.

We talk. We get loud. We eat. We drink.

And I come away feeling refreshed and ready to take on whatever HIE throws my way because I know I’m never facing it alone.

They’re my normal.

And everyone should get to have that feeling.

For all of February, 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. No gesture is too small! 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.

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No Tragedy Could Stop This Former Football Star From Proposing to His High School Sweetheart

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Tragedy couldn’t stop this couple from getting married the way they always wanted.

Larry Ragsdale and Kelcie Yeoman have been best friends since grade school. They were high school sweethearts in Grants Pass, Oregon, where Ragsdale was a football and track star, featured on Sports Illustrated’s “Faces in the Crowd” list. Yeoman, who was the student body vice president, cheered him on every step of the way.

 

The two encountered their first tragedy in 2007 when Yeoman’s mother, Anita, was killed in a car accident.

“Larry was just kind of holding me and crying,” Yeoman told ABC News. “He told my mommy, he said, ‘I promised her that day that I would take care of you forever.’

In 2010, Ragsdale was ready to make good on that promise. He asked Yeoman’s father for permission to marry the love of his life. He planned to pop the question three days later, with her family there, on a trip to Disneyland.

But before the trip happened, he was in a head-on collision with an alleged drunk driver, according to The Corvallis Gazzette-Times. Yeoman, following behind in another car, was the first on the scene to find her boyfriend unresponsive. After being in a coma for months, he woke up with severe brain damage, unable to walk like normal, reports People Magazine.

Yeoman never lost hope in the idea of a full recovery. She even got a job working at the same hospital that Ragsdale was undergoing rehabilitation so she could always be by his side.

It took three difficult years, but in 2013 Ragsdale could finally to ask the question he’d been saving. Yoeman’s sister captured the heartwarming moment on a video (below). She posted it to the fundraising page she set up to raise money for a wedding in Disneyland.

“He didn’t get the chance to propose to her the way he had intended to, but we now have the chance to give this amazing couple the wedding and honeymoon of their dreams at their favorite place on earth,” McKenzie Yeoman wrote on the IndieGoGo page.

Not only did the page exceed its goal, but ABC News and Disney Fairy Tales Wedding and Honeymoons recently gave the couple a five-night honeymoon at the Disneyland resort in California. That moment was also captured on camera.

Photo: Facebook / Send Kelcie and Larry to Disneyland

The couple will use any excess money from their fundraising campaign to help pay for Ragsdale’s continued medical treatments.

Photos from the couple’s Facebook page

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What I Learned From My Son's 'Ninja Ballet'

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My 11-year-old son Carter’s favorite thing to do is something he calls “swinging stuff” and that my husband, Brian, and I refer to as “ninja ballet.” It involves a plastic sword, light saber or stick, and lots of jumping, spinning and twirling (of both the stick and the boy himself).

Carter April 30 2014 (1)

Carter, who suffered a prenatal brain injury and has mental illness and other disabilities as a result, is devout in his practice of this art. For at least four years, he’s spent many hours every week, sometimes several hours in a single day, working with his stick in the yard. He spins. He whirls. He shouts.

The whole thing is surprisingly graceful and fun to watch. In his imagination, he’s fighting battles like the ones in the movies and TV shows he likes (“Star Wars,” “Lord of the Rings,” “Ninjago”), but from my place in the dining room where I watch him through the sliders, it looks more like dancing than dueling.

I see him out there, toiling happily, working and puffing and struggling to master a new move he’s invented, and he is an artist of his own training and invention. “I can’t wait to go home and swing my stick,” he says sometimes after a day at school, and I imagine young Mozart saying after a day with math and history, “I can’t wait to go home and get to my piano.” He’s like Emily Dickinson, devoted to his art not for fame or admiration but because the art is its own reward.

Does that seem like too much? Maybe. Comparing a little boy playing in the yard with a broomstick to some of the greatest artists in history is a stretch, but Carter’s devotion is unassailable. Unless something changes in our culture, there aren’t going to be any TV shows that showcase his skills. He’s not going to get rich or famous because of it.

But… is his life not immeasurably better because he has art? Because he seeks to meet a challenge he has created for himself and is diligent in improving his form? Because he loses himself in something he loves without concern that the thing he loves is nothing most people would recognize?

He does this with almost no audience. Sometimes, he shows my husband or me or one of his grandparents what he can do. He took his stick to our church retreat and enjoyed showing a few people his moves. He doesn’t mind being watched, but he doesn’t do it for the purpose of performance or for any other purpose beyond the joy of the thing itself.

Whether we are stick swingers, word slingers, food composers, paint smearers, garden tenders, quilt builders or music makers, may we all find some of Carter’s perseverance and dedication in ourselves. Our lives, too, will be immeasurably better.

This post originally appeared on No Points for Style.

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Contestant With Special Needs Is ‘a Smashing Success’ on ‘Wheel of Fortune’

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On Wednesday night’s episode of “Wheel of Fortune,” everyone was on #TeamTrent.

That’s because Trenton “Trent” Girone, from Peoria, Ariz., completely stole the show. Girone is a 21-year-old man with Asperger’s and Tourette syndrome. He’s undergone nine brain surgeries and an open heart surgery, according to ABC. Since he was 2 years old, he’s been a “Wheel of Fortune” mega-fan.

Watch below as Girone appropriately solves the “A Smashing Success” puzzle and then shows off his “Wheel of Fortune” trivia knowledge. It’s no wonder he was trending on Twitter long  all night long.


In the end, Girone didn’t walk away with the big prize. But hey, winning isn’t everything.

“I want to thank all of the contestant staff for taking the time to help me, and would like to thank Pat Sajak for his assistance, as well,” Girone later wrote on the “Wheel of Fortune” website. “I have some physical challenges that they were aware of and they made sure I was safe and comfortable.”

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