To the Woman Who Objected to the Leash on My Child With Special Needs

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When I first saw you behind me, I smiled. We stood near each other in line for security at the airport. I had just finished loading the last of three bins onto the X-ray belt when I looked up to find you scornfully staring at my child. The blistering look you gave me didn’t go unnoticed, either. For a second, I thought maybe you were just having a bad day, but then I overheard the comments you made to your friend. I heard you tell her I’m a lazy parent. I also heard you say that people, such as me, shouldn’t have children. I heard you ramble off a list of things you would do differently. I overheard your entire conversation.

Based off what you saw, I don’t blame you for having said what you did. I understand where you were coming from. It’s nice to know you were feeling protective over my child. After all, you saw a cute 2-year-old brunette with big brown eyes, jumping, laughing and having fun with her tether strapped onto her back. I agree with you; children don’t belong on leashes, and I often feel as if I’m not good enough to raise such a beautiful child. Not that you would have cared, but I wish I could have shared with you a few things that weren’t so obvious at that moment. I wish I could have talked to you about what you couldn’t see.

Lynda Coto the mighty.2-001

The little girl you saw in the airport isn’t your “typical” child. I know she looks “normal” on the outside, but on the inside, she’s special. What you didn’t see is that my child is partially blind. As a newborn, she suffered a stroke. Her brain injury has caused her to have a very difficult time in public places. What wasn’t apparent is the noise in public places, such as an airport, can be very distressing and overwhelming for her, often causing her to run away. What wasn’t so obvious is she has difficulty seeing and listening at the same time, not because she is unruly, but because she can’t divide her attention between sight and sound. What you didn’t see is that she has difficulty walking, often tripping and falling down. What I wanted to tell you is I tried your stroller idea, but she started to lose muscle tone from lack of exercise. I really wanted to talk about the daily struggle to keep her safe, but before I could address your concerns, you walked off to catch your flight.

You see, the day I left our developmental pediatrician’s office to buy my daughter’s new accessory, I knew you and I would meet one day. I knew what you thought of me long before I heard your spoken words. I knew you would talk about me and disagree with my parenting choices. What I didn’t know is how bad your words would hurt. I didn’t know that something as silly as an opinion would pierce through my heart every time I secured the tether onto my child.

I still think about you. But now, when I recall our encounter, I am filled with gratefulness. Thank you for causing me to recognize how strong of a woman I am. Thank you for shining a light on the lengths I will go to ensure my child’s safety, even if it means taking one for the team. Thank you for helping me understanding that in moments of pain, I can find happiness in my daughter’s smile and sound of her laughter just as I did that day in the line of security.

Follow this journey on A Beautifully Messy Life.

 The Mighty is asking the following: Write a thank-you letter to someone you never expected you’d thank. 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. Check out our Submit a Story page for more about our submission guidelines.

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'He Used to Be in a Coma, I Used to Be a Fat Guy.'

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It started with a deal.

“He used to be in a coma, I used to be a fat guy,” Rick Delashmit wrote on a photo he posted to Imgur of him and his son this week. “If he’s standing, I’m running.” That photo has since earned more than 2.5 million views.

My son is recovering from a brain injury. We have a deal now…if he's standing, I'm running. He's up to 90 minutes and I'm down 70 lbs.

The Delashmit family was in a car accident in 2008, leaving everyone virtually unharmed, except for the oldest son Reece. The then 4-year-old was airlifted from the scene, fell into a coma and spent almost four months in the intensive care unit.

Reece, now 12, has made great strides since the accident. Although he’s still unable to speak, he’s now able to eat and drink normally. Reece uses a wheelchair, but he can walk a few dozen yards with the help of a gait trainer.

“He’s come so far from being tube-fed, bed-ridden, unresponsive to stimulus when he came home from the hospital after our accident back in ’08,” Delashmit told The Mighty in an email. “He’s in school, he’s learning, he’s communicating, he’s a chick magnet, he’s smiling and laughing all the time.”

Last year, Delashmit realized that his weight was tipping the scales at 215 pounds, heavy for his 5-foot-2 stature. He decided to make a deal with Reece that’s resulted in great progress for both of them. When Reece practices standing up, Delashmit runs on the treadmill.

To date, Delashmit has lost 70 pounds, and his son can now stand for 90 minutes. Before the pact, Reece couldn’t stand for more than a half hour, and Delashmit couldn’t run 1.5 miles without stopping. Now, Delashmit can run 6 miles in about 50 minutes.

Delashmit’s before and after the deal.

The Delashmit home has been completely accessible since early 2014, and their home gym/therapy room has enough space for all of Reece’s equipment, as well as a treadmill and weight machine.

“It just occurred to me that I’ve got the most amazing motivation for hard work and perseverance right in front of me,” Delashmit told The Mighty. “Once we could be in the same room working at the same time, there really was no excuse any more not to keep up with his pace.”

The pact has brought the Delashmit family even closer, and Delashmit often captures Reece’s determination, as well as his other family moments, and posts photos and videos to Imgur, Reddit, YouTube and Facebook.

 

A Bond Between Bro’s

 

My oldest hasn't been able to speak since suffering a brain injury in 2008, but that doesn't stop him from comforting his little brother when he's not feeling well.

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h/t Runner’s World

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When a Heart-Rate Monitor Showed Me How Strong a Mother's Love Is

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Stories often circulate about the healing and comforting power of a mother’s love. It’s something that’s simply accepted and understood by all of us. But for a time, I believed that it was a power lost to me — until a heart-rate monitor showed me otherwise.

In the weeks following his accident, my son, Harry, was in a coma, on a ventilator and had no less than six tubes going into his 11-month-old body at any one time. I ached to hold him and bury my face into the warm, chubby little folds at the back of his neck. The physical pain of not being able to wrap my baby in my arms was sharply felt throughout my body.

As soon as he was breathing on his own, I attempted to hold him for the first time. I was terrified. Terrified of holding my own child. It took two nurses, a doctor and my husband to attempt to delicately place him in my arms, while ensuring that none of the lines got tangled and that the tube draining fluid from around his brain (the most important tube) was carefully monitored.

But I knew of the healing touch of a mother. Perhaps this would be the miracle we so desperately craved. My touch would heal, calm and reassure my son.

Slowly, carefully, down into my arms. Finally, I could feel the familiar and comforting weight of my son in my lap. And then I felt warmth on my arm. The tube draining fluid from around his brain was leaking. He was carefully and quickly placed back onto the clinical comfort of his hospital bed.

Time passed, the tubes were removed. Harry then entered the confused and agitated stage of recovery after a brain injury stories”>traumatic brain injury. In this stage, adults recovering from a brain injury are often verbally abusive and have to be carefully watched for fearing of hurting themselves or others. They are unable to control this behavior as they struggle to make sense of the world around them.

Harry began whimpering during this stage. His hospital room had to be kept dark. No stimulus. Just quiet and the sounds of my boy whimpering.

For three weeks, he whimpered. For three weeks I held him, day and night, unable to comfort him. Occasionally, there would be a brief moment when my voice would calm him, and he would be quiet and peaceful. But just for a moment. Time passed, the whimpering ended.

Having been a mother for only 11 months, I feared that I didn’t have the touch of healing love that I so desperately wanted to envelope my son with. I wanted him to know that everything would be OK, his mom was with him and everything would be OK. Time passed, but my seed of doubt remained.

Harry went back in the hospital for major neurosurgery. After the procedure, we were told to go to the Pediatric Intensive Care Unit (PICU) to meet him. The surgery, while successful, was more complicated than his surgeons had hoped for and our little boy was having a tough recovery.

There he was lying on the hospital bed, eyes shut, head bandaged up, whimpering. He wasn’t comfortable. From months of obsessing over hospital monitors, I noticed his heart rate was elevated: 140, 142, 141, 142 …

I wrapped my arms around him: 130, 126, 121 …

I put my face to his: 118, 114, 110 …

I kissed his closed eyes, kissed his forehead: 108, 105, 100 …

I whispered that his mom was here and that everything was going to be OK: 98, 92, 80.

A version of this post originally appeared on Give the Boy a Chance.

The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? 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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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.

amy

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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