The Bus Driver’s Comment That Made Me Rethink the Way I Treat My Daughter

“They can do a lot more than we give them credit for.”

This was the comment that my daughter’s bus driver made one day as I was helping my daughter get on the bus to school. It was a seemingly innocent comment, but it really made me think. Am I not giving my daughter enough credit for the things she can do, or am I expecting too much of her?

In case you’re curious, this was in regards to my daughter holding the hand railing when getting on the bus in the mornings. Initially, I had been pretty much lifting her into the school bus. After all, that first step is steep. It can be a doozy.

It was just the day before that comment that the bus driver lamented on trying to get all the children to hold the railing, if at all possible. It seemed like a reasonable request, given the circumstances. My daughter is fairly mobile. In fact, despite her autism diagnosis and developmental delays, her gross and fine motor skills were almost always on par with other children her age. This was one area of which she always excelled.

Of course, she handled this task perfectly. I moved her toy pig, her most beloved possession, to her other hand. I placed her hand on the railing, and sure enough, she used the railing exactly as intended. This isn’t to say that she didn’t need me behind her should she fall. This also isn’t to say that I don’t basically need to remind her every day to hold the railing. It’s only to say that the ability was there. If given the support, she was able to accomplish this task.

After her bus drove away, I contemplated the situation a little more. How often do I do this to my daughter? The honest answer is probably quite a bit. My response to her school bus driver’s comment, by the way, had been very simple and direct. I responded back that sometimes when they’re so little, you just want to protect them. Especially when they have special needs. I even hugged myself to demonstrate what I meant.

The world is a very unforgiving place for those who are different. My daughter has already experienced judgment from not only her own peers, but even adults. It’s a little sad to have to explain to another 3-year-old why your child doesn’t speak as well as them.

It’s somewhat disturbing when you see a 3- or 4-year-old giving your child a snotty look, or purposely avoiding her. The absolute worse is when it’s an adult doing these things.

I worry. I worry she won’t fit in. I worry she’ll be made fun of for not being a cookie-cutter version of every one else. I worry she’ll have no friends. I worry that she’ll have no one attend her birthday parties, just like the stories I keep reading over and over again in the news. Mostly, I just worry.

As all of these thoughts are racing through my mind, something finally hit me. Perhaps, as with the task of using the bus railing, I’m not giving my daughter enough credit. It’s possible she’s made of tougher stuff than I realize. Maybe she’s stronger than I’m able to understand.

I may not be able to protect her from everything, but I can be standing behind her should she fall. With proper support, it’s very possible that she could accomplish the very things that I worry so much about. If not, then I’ll still be standing behind her, or waiting nearby should she need me.

Can my daughter accomplish a lot more than I give her credit for? I don’t know. Maybe. I’m just going to have to take that first step, and let her try. I just need to watch that first step. I hear it can be a doozy.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or illness. 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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When Other Grieving Mothers Made Me Feel Like a Mama Again

Mars When my son, Mario Maurice Dennison, died at 5 days old, it felt like my claim to motherhood vanished into thin air.

Unlike most new moms, I didn’t have the chance to boast about my birthing experience. Most people, afraid of hurting my feelings, didn’t ask, and I felt weird bringing it up. I would have loved to talk about how my two epidurals didn’t work, how the doctors and nurses had to put on jackets for my delivery because I needed the room to be uber-cold to be (relatively) comfortable. I would have loved to talk about how I’ve never felt prouder of doing anything in my entire life.

Sometimes it felt like maybe it was all a dream because I wasn’t and didn’t look pregnant anymore, but I also didn’t bring a baby home from the hospital. Many people, some of whom I love dearly, didn’t know what to say, so they didn’t say anything. Here I was, wanting to shout with a giant megaphone, “I had a beautiful baby boy! He was perfect! He had my eyes and long legs, and his face was a teeny-tiny version of his dad’s! He had a full head of hair even though he was born at 32 weeks! Here, let me show you his pictures and videos…” And here were people, not even acknowledging that his entire life had already come and gone, despite the fact that I’d grown him, birthed him and watched him die. It was both sad and infuriating.

Unless you’ve experienced it, it’s impossible to know how it feels to possess enough love to last your child’s entire life but only have a pregnancy — or hours/days after your baby’s birth — to shower your child with that love. Without a baby in my arms, that love started to feel heavy and stagnant. It resembled a burden rather than a blessing, and it gave me a perspective I wish I never knew about the words “dead weight.” My experience being a mother was so far from typical that I totally felt like a pariah.

But then, something so amazing happened. A woman who had also lost her baby invited me to a “secret” Facebook group for women trying to conceive (TTC) after the loss of a baby/babies. While being eligible for membership in this group is absolutely brutal, I’m beyond thankful to have found these new mama friends. Recently, several new faces joined our group. With the addition of every member, my heart literally aches as I envision each one of them doing what I did: kissing their newborn baby for the last time, walking into a funeral home with aching, empty arms and wondering how in the world it’s possible to still be alive when all that’s left in your chest is the gaping hole where your heart used to reside. The fact that more people continue to suffer this plight is sometimes an unbearable thought. That some kind of natural law doesn’t exist to make it impossible to outlive your children is the worst injustice ever. There’s no greater sense of powerlessness than wanting, so very desperately, to sacrifice your own life to save your baby and knowing you can’t. Having all survived this horror, there’s not much, if anything, we hold back in the group.

36.5 Sweet FaceAfter

On the pages of this Facebook group, I finally feel like part of a real moms’ club. I share Mario not just without hesitation but while beaming with pride. I’ve talked about how comforting it was to hold him after he died because I wasn’t allowed to hold him when he was alive. I’ve written about how he was still so warm, how it was the first time I saw his face without a tube taped to it and how he was even more beautiful than I’d imagined. I’ve talked about how excited I was when I finally saw the full set of hair on the back of his head and how I felt an enormous and indescribable sense of peace holding him, despite the circumstances. I’ve noted how I still have no idea how I handed him over to the nurse and kissed his face one final time, and I’ve written about how the only way I walked out of the hospital without him was because I knew if I gave into my wobbly knees and crumpled to the ground, I would never, ever get back up. Knowing I could share these details without feeling like an outcast was is so freeing.

Mama for Names All that love I have for Mario — a love that had felt trapped and sometimes like it was suffocating me — now has a cozy home. The mothers and babies in this group, they receive it. Each time I comment on a post or like a picture of someone’s son or daughter, that love travels from me to them and settles into new hearts. With every “I can relate/I know what you mean/I’ve been there,” the love we all have for our babies remains alive. Moms in this group parent their dead children by bravely and lovingly sharing stories and pictures, speaking their babies’ names and supporting one another unconditionally. Bearing witness to these acts of motherhood is the most incredible honor. It’s been the only thing since losing Mario that’s made me feel like there’s anything normal about my own experience as a mama.

Thanks to all these amazing women and their children, on Mother’s Day I will feel like a legitimate mama, and my love for my son will have a place to delicately land. So thank you to all the incredible women in my Facebook group, as well as all the other baby loss moms who so bravely share your stories. Because of you, I can proudly and confidently say I am a mother.

The Mighty is asking the following: What’s a memory with a loved one that you didn’t realize meant so much until they passed away? 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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How to Love Your Children Through the Loss of a Sibling

I would bet my life savings on the fact that there is not one parenting book that has a chapter dedicated to how to love your children through the loss of a sibling.

It’s not natural. So it’s not something that anyone naturally chooses to prepare for or read up on when they prepare themselves for the holy task of bringing a child into this world.

When we suddenly found ourselves in the role of parents whose children have tragically lost a sibling, we made a few promises to them. We said things like this, and I’ll quote their father:

“You will wrestle with questions over your brothers passing that you may never get answers for in this life, but know this: I will wrestle with you.”

“Your Dad sees and cares about your broken heart. I am with you, son.”

“This Papa has your back, baby girl.”

“I will carry you through this, my precious boy.”

We sat with them and told them they were never to feel alone in grief. We told them that as a family, we were choosing to grieve together and to grieve openly, that no one ever had to hide their tears. We told them that even in our own sadness as parents, we would always be available, never unapproachable.

We’ve learned to recognize that some behaviors are markers for grief that hasn’t found its way out in words.

We’re learning to slow down and listen.

We don’t have it all together, but we’re doing the best we can. After all, there is no book. And even if there was, it wasn’t written for my family or for my kids.

And grief has a way of being unique and unboxed.

So today when I was driving in the van with my three youngest, talking about a schoolmate of Emma and Aiden’s who had passed away, we also started talking about our own sadness.

As the conversation was near the end, these are the wise words I heard in the back seat:

“Sometimes when you cry it comes out of your eyes, but sometimes when you cry it just stays in your soul.” -Elia Jane Loux (almost 8)

So as we carry on, sometimes holding our tears in our soul, and sometimes allowing them to pour down our face, we wrap each other up and hold on tight.

My children, thank God, are not afraid to see their mother or father crying. They’ve learned that it is as natural as breathing. They don’t go away quietly and hide.

They’ve been welcomed in. More than not, if the kids see me cry, they come to me and wrap their arms around me and begin to share their own hearts, too.

It has shown them that I love and I feel and that they are welcome into my heart.

It has also taught them, that when they drop to the floor without warning and start crying, or when they start acting out because those darn tears are stuck in their soul, that we will sweep in and gather them up and hold them tight.

I promised my children they would not feel alone.

I pray with all of my heart that one day they will look back and feel that I kept my word.

This post originally appeared on Tracie Loux’s website.

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Doctors Said She Might Never Walk. But That Day, I Watched Her Surf.

We arrived in Galveston, Texas one day early. My husband, John, and I knew Samantha would need a day to adjust to this new environment. We checked into the hotel and then took off to visit a local surf shop where we met Josh and introduced him to Sam. Josh was at the counter with his laptop and told us he would be surfing with Sam. He had Sam’s biography so he knew she was 10 years old, nonverbal and deaf. Josh traveled all the way from Southern California for this event and I was stoked to find out that he would be surfing with Sam.

sam and Josh 2011

I knew Sam was a little nervous when we entered the shop but I liked the way she reached out to touch Josh’s hand when he came around the counter to speak to her. This meant a lot. It wasn’t long ago when Sam would withdraw her hand from others as they reached out to touch her. Now, here she was holding her red basting brush in one hand and reaching out to Josh with the other – an instant connection. We told him how much Sam loved to swim but how she had never been to the beach. Surely, this was going to be an entirely new experience for her but we had faith in her ability to adapt.

It isn’t easy traveling when you have to bring your entire house on a vacation. Sam is a creature of habit. She likes structure, familiarity and wherever we go we need to make sure we have access to a refrigerator, microwave and a few comforts of home (i.e. favorite blankets and toys). We also need diapers, wipes, foam bath soap, medications, several extra clothes, favorite snacks, sippy cups and spoons. Okay, maybe it is not the entire house but when I am packing for Sam it sure feels like it.

Sam finally settled down, took a bath and went to sleep. John and I watched television for a bit and then we decided to call it a night. As I was lying in bed, all I could think about was tomorrow. I couldn’t sleep. I was too excited. I imagined Sam surfing and how or if she would surf. I had been waiting for this opportunity for a few years. My dream for Sam was finally coming true in Texas. I felt like a child waiting for Santa at Christmas.

Sam and Josh_love

Morning came and, at last, Sam was awake. John bought breakfast and we went through our usual morning routine. I dressed Sam in her Billabong swimsuit, rash guard and board shorts and made sure she looked extra cute for her big day. We were all ready to go to the beach and, suddenly, Sam grew fearful. She was crawling around the hotel room and refused to stand up or get into her stroller. I thought, “Oh no! She’s having a meltdown. She’s scared.”

We told Josh that Sam was fearless. Did we have too much faith?” John and I gave Sam a little time to calm down and then managed to get her into her stroller. She was kicking her right leg nervously and wanted to hold my hand as John pushed the stroller to the car. Sam reluctantly got into the car and I strapped her into her car seat as she fussed. I prayed that she would be okay by the time we got to the beach…and she was. Once Sam saw the sand and the water, everything became okay. She sat for a little while, observed and then decided to run towards the salty beach water, sit, eat sand and chew on seaweed. Sam was happy. I was happy.

When it was Sam’s turn to surf, Josh greeted her. He got his surfboard ready, I put Sam’s life jacket on her, and then the most amazing thing happened – Sam was on the surfboard, taking off on her belly with Josh right behind her. Everyone cheered.

I am pretty sure my heart smiled bigger than it has ever smiled before. I felt like I was surfing! John shot over 700 pictures as Sam surfed with Josh that day. She loved it! We loved it! There was so much happiness and gratitude in our hearts as Josh and all of the awesome volunteers helped Sam surf.

Doctors once told us Sam might never walk, but here she was surfing!

Sam and Josh 2015

Since this spectacular day, four years have passed. Sam is still surfing and we have grown very close to Josh Harper and Keith Lovgren, co-founders of Waves of Impact. They visit us in Texas and we visit them in California every year. They are a HUGE part of our lives. They are our family.

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3 Ways Having a Child with Special Needs Can Help Your Career

I want to highlight how parents of children with special needs are able to succeed in their careers.

Being a parent is hard work. Toss in things like autism, illness, or a chronic condition and it can get a little more interesting. As the mom of a son with some challenges, I’ve discovered there are some really great qualities I and others in my “tribe” share.

1. We look at things differently. We’ve quietly watched other children who are the same age as ours do things our child is still struggling with. We celebrate the smallest of victories where others may take those for granted. How does this translate to work? We are always on the lookout for what’s working, what is not, how to improve the process and how to see through problems with a critical and honest eye.

2. We can pivot when needed. So many of our children have good days and bad days. When those good days are here, we want to take advantage of them and go, go, go! But we also know what to look for when things may be slowing down or come to a screeching halt. We have adapted to be flexible in our thoughts, our actions, and our lives. This can be a real advantage when something at work is just not going well. We can pivot and find ourselves looking at the situation in a new way. When we come back we often times find ourselves looking at that troublesome situation with a fresh perspective.

3. We investigate. Technology has increased so much that those who have a rare disease can find others with the click of a few buttons. Parents of children with special needs are research experts. We can find everything online and are voracious readers. With social media we’ve been known to find and directly correspond with the Doctors and researchers who are at the forefront of the research we are interested in. Ask us to solve problems! We know how to look into situations, research, do field studies, and report back with our best suggestions.

I’d love to hear from you. How have you been shaped by your child with special needs? What strengths and positive traits have you developed that have enhanced your career?

A version of this post originally appeared here.

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Student Project Exposes the Part of College Life No One Talks About

When Abby Belani was elected as the Director of Emotional Wellbeing on Stanford University’s student government board, she knew she wanted to focus on issues pertaining to emotional and mental health.

The 21-year-old senior from the Bay Area in California has worked as both a peer counselor and a residential advisor at Stanford, so she’s had firsthand exposure to the sorts of issues students face.

“There was always a problem of expression,” Belani told The Mighty in an email. “Almost everyone felt some sort of struggle and also felt isolated in their struggles — the happy faces of campus simply weren’t showing what was really going on.”

Belani assembled several students to comprise Stanford’s Emotional Wellbeing team, and the group began brainstorming ways to start conversations about mental health on campus. Together, they decided to encourage other students to speak up about mental health issues through artistic expression. With that, the idea for “Release.Restart.Review,” a student-made mental health anthology of art and literature, was born.

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The students put out a call for writing and artwork submissions, expecting enough to fill a 15 to 20-page literary magazine. Within a month, with no additional exposure, they received more than 100 pages worth of material. The final version is 129 pages long.

“It became clear to us that people were ready for and wanted a way to express themselves, but they just didn’t have the space to do so yet,” Belani told The Mighty.

“Release.Resart.Review” includes essays, poetry, short fiction, photos, paintings and graphic designs. The pieces cover topics such as anxiety, eating disorders, depression, suicide, stress, grief and other issues students experience daily. Some pieces were submitted anonymously, but most students chose to keep their names associated with their works. Each entry gives voice to a topic students may not have felt able to openly discuss before.

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“Untitled” by Chase Porter
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“Gentle Reminder” by Cynthia Truong

“We all go through life differently with different responses or different experiences, but emotion is universal, and that’s what this anthology sought to capture,” Belani told The Mighty. “At Stanford, like in so many other places, emotions are highly devalued — everyone is expected to be happy or occasionally stressed, but any other emotion is stifled. The anthology sought to normalize the full range of emotions and let people feel safe enough to feel.”

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“Life in Color” by Marisa Tashima

After the anthology was released in March 2015, Belani and the Emotional Wellbeing team hosted a series of workshops in which the artists and writers featured in the anthology worked with other students about how to productively channel emotional distress into something artistic. Each workshop ended with an open discussion about the different issue they were facing.

Belani says she hopes the anthology will continue to inspire Stanford students to keep an open dialogue about mental health and, in turn, reduce the stigma surrounding these topics on campus.

“I hope it’ll be a step in the right direction toward fostering the kind of emotional conversations that Stanford needs and providing people with relief in knowing that they’re not alone in feeling what they feel,” Belani said.

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“Self-Portrait” by Ryoko Hamaguchi Top: “Some days, I still cannot bare to face, let alone love, what I see in the MIRROR. Middle: “My value lies not in the FALL, but in the steps I take to get back UP. Bottom: “My beauty is grounded in my PAST but extends into my FUTURE. My beauty is my ability to STAND TALL. Look forward and REJOICE in the day that lies ahead.
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“Untitled” by Sung Woo Kim
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“Untitled” by Sung Woo Kim
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“Untitled” by Sung Woo Kim
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“Spontaneity” by Anika Nagpal
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“The Butterfly Project” by Anika Nagpal

For more information about “Release.Restart.Review,” head here. To purchase the anthology or view a free sample, search for the project on iTunes Books.

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We face disability, disease and mental illness together.