As I sat down to write this article, I had a serious thought. I wondered if my husband would mind if I revealed any of the inner-workings of our marriage. I mean, shouldn’t our marriage be a private matter reserved for the two of us? And then I laughed and laughed.

Because the reality is that privacy has largely evaporated for us, and part of this is related to having a child with autism. Or a child in general, actually. This dwindling of privacy began when I was 20 weeks pregnant; the midwives were concerned that my amniotic fluid might be leaking, and they met us at the hospital. The midwife couldn’t find a proper medical light thingy to conduct the, uh, assessment, so she instructed my husband to angle a rickety lamp at me instead. I was horrified. I now label that day as the day my privacy began its decline.

From that moment onward, our relationship, increasingly exposed to the elements that come from moving across the country (twice), finishing a Ph.D, getting new jobs and having a child with disabilities, has been sunburned and frostbitten. But thankfully, it has survived.

But, sadly, privacy and emotional monogamy didn’t make it. By emotional monogamy, I mean the idea that your spouse is the first and primary person with whom you share your emotions. That door has been flung wide open — it takes a village to make our marriage work.

Why has this happened, you might ask? There are five key reasons:

1. It can be really hard, anxiety-provoking stuff for both people. There is no “rock” in this situation — both people are under a lot of stress. I cannot always lean on my husband. He’s thin and tired and he might fall over (kidding!). But seriously, imagine trying to lean on someone who’s already hunched over. We need other people to prop us up. We share a lot (probably more than they want to know) with friends, family, therapists, hairstylists, online groups, colleagues and so on. It keeps us vertical.

2. Even when we don’t verbally share them, our emotions are written all over our faces. At least they’re written all over mine, anyway. Poker-face feigning is low on my priority list. I’m now proudly channeling my late grandma, a woman who used to let it all hang out there. She said what she felt, and it used to mortify me: “Show some decorum, Grandma.” Meh, decorum is overrated.

3. We constantly repeat our personal information to more people than I can count. I have lost count of the number of health professionals who have asked extremely personal questions about our health histories, our marriage, our decisions and other statistics they could just (for the love of God) read about in the file folder they’re holding. I just love retelling and reliving these personal details on a regular basis. Ciao privacy.

4. And then there are the social workers and bureaucrats who become part of your life. These people are supposed to help you navigate various disability resources and services, but they end up coldly intruding into your family as a rite of passage to access said services. Nothing feels quite as humiliating as crying in front of a blank-faced stranger as he rolls through questions about your child, your mental health, your marriage, your support network and so on. But do you want help for you and your child? Sign away some of your privacy.

5. If you run a home therapy program, your house converts into a therapy center at least five days a week. And our apologies, but we have argued in front of our son’s therapists and greeted them with a palpable tension in the air. It can’t be helped — our home is our only real place of semi-privacy. His therapists help our marriage and family all the time, though. They teach our son, share in his accomplishments, troubleshoot with us and even provide respite so we can have occasional date nights.

Obviously, the diameter of our marriage and family circle has widened — and it needed to. While my husband and I do the day-to-day parenting of partnering, there is also a team of people involved in keeping us afloat.

So, there you have it. Autism, for better or for worse, wades into our marriage all the time. Often it does so in ways that attract good things to us, like supportive friends and family and wonderful people we would never have known otherwise. Yet it can also make us feel exposed and encroached upon. Most days we can find that sweet spot that comes with balancing these realities, and other days are harder.

But that’s (my) marriage and autism. It’s complicated, and it includes a few more people than I imagined, but it’s a damn good team.

Barker-Brown Family

A version of this post originally appeared on Project Bearings.

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Every six months, my son, Caleb’s, physical therapist does a re-evaluation. Caleb’s progress over the last few months is discussed and goals are reviewed. I’ve always hated therapy evaluations, but I understand they are necessary for insurance. Therapists have to be able to show that there is progress and evaluations make that possible. Currently Caleb has a therapy goal of being able to walk in his KAFOs for five minutes without stopping.

Caleb can do it… but he hates it. He doesn’t like walking with his KAFOs. He doesn’t like walking. It’s hard, awkward, and cumbersome. Honestly, it’s not functional. It’s simply walking for the sake of walking. He hates it.

As we are getting ready for a therapy re-evaluation next week and knowing that we will have to set goals, I asked Caleb if walking is important to him.

His answer, without hesitation: no.

Walking is not important to him. He’s 9 years old and I think he is old enough to be a part of his goal planning. He should get a say. And he says “no” to walking.

I get it. I really do. Walking is really hard work for him. And he needs a lot of support to do it. Even when he was walking really well (before the tethered cord surgery three years ago… wow, has it been three years?!), he would choose his wheels over his walker when given the choice. After that surgery, he lost everything. He had to start all over. He’s had to work so hard to gain back even some of what he lost.

I was hopeful that he would gain back the ability to walk but then weeks turned to months… and now years. I’m not so hopeful now. And honestly, I’m OK with that. I’ve never had a problem with his need for a wheelchair. I love his wheelchair. It is independence, speed, confidence and mobility. It is a blessing.

I’m OK if he never walks again. But I want him to be OK with that. I think he is. Walking isn’t important to him. I respect that. I’m actually relieved to hear him say it. I feel like a weight has been lifted.

I think he felt the same way.

I’m glad I asked.

This post originally appeared on Beyond Measure.

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.

“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.

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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.

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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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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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