People Think This Causes Divorce. It’s Really What Holds Us Together.

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Being married or staying married or leaving marriage are all very personal and sometimes painful topics for anyone — and more so for special needs families. I’ve seen statistics that go up to 80 percent for the special needs parent divorce rate (though that number has been debunked). I’ve met gorgeous moms whose husbands walked out of the labor and delivery room and never came back. I’ve seen marriage after marriage disintegrated by the overwhelming challenge of having a special needs child. When I survey the landscape, marriage and special needs kids seem to be like oil and water.

I often wish I could shout from the rooftops that special needs parenting can bring you closer together rather than drive you apart! My special needs son has often been the glue that has held my marriage together. I believe that having a child with special needs can be the bond that hold you and your spouse tighter and closer, when all else in life falls apart.

I’m not saying my marriage has been perfect. Honestly, it’s been on the brink of disaster as much or more than any marriage that has endured for 22 years. And I am not even saying that the added stress of having a special needs son didn’t add fuel to those disaster moments. However, I am saying that in those moments, there was one specific incentive to just hold on for one more day, and that was our special needs son, Nicolas.

We’ve been special needs parents for almost 15 years and I believe that our joint love for our son now binds us to each other in a way that is stronger than any force that could come between us. When my husband and I cannot see eye to eye on anything, we have a common thread that only we two share. There is one thing, one undeniable experience that no one else in the world can or will ever understand: being Nick’s parents. Over the years, even when we disagreed on how to parent Nick, the shared journey continued to push us further down our unique path. He is our marriage “secret ingredient.”

Here’s my advice: You can choose, each day, to be on the same team or not. There is enough coming at you — plenty of opposition — and you don’t need more inside your own home. You have only one other person with whom you can choose to side, huddle and share those thoughts and fears that no one else will ever comprehend. The sooner you get the “same team” mentality going, the sooner you’re on your way to overcoming any obstacle.

Let’s face it, our perspective on life is unique. We know that the little stuff is basically anything else that isn’t related to our child. So the toilet seat position, the dirty laundry on the floor, the working late or financial struggles that might cause others to lose focus, should seem (because they are) so miniscule to us, that they don’t even affect us. We might disagree on everything, but we must agree on one thing: wanting the best for our child. Does this apply to every parent? Well, I would say yes — we have a typical son as well, and we both want the best for him. He, too, is on a unique journey, but it is one that he does and will take on his own. He’s been an independent, smart, fully functioning guy for a while now. We “contribute” to his success, which is different from our special son, where we very literally “determine” his success, now and in the future.

We long ago put aside the “me vs. you” and picked up the “us vs. the world” mentality. Not only has it served our marriage well, but it has also been true as we journey through special needs parenting together.

Parenting a special needs child together with your spouse can become the most wonderful experience the two of you will ever share. It can create an indestructible bond that will hold you together in the face of every adversity. Together you will face mountains and climb them together, helping each other along the way, so that when you reach the top, you have a friend by your side to admire the view.

The Mighty wants to hear more about marriage 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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To the Husband Who Loved Me at My Best and My Worst

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taylorarthur We were partners when we started out – Jack and I – almost 16 years ago. In fact, to be quite honest, I thought my Jack had won the prize. I was smart and virtuous and hard-working. I was willing to go the distance, work the night job so he could work the research job, skip class to grocery shop. I cooked the dinners and kept the bathroom clean so he could scratch his head over biochemistry and swear under his breath at his lab partners. I was willing to put my teaching certificate on hold so he could go straight to medical school. I was willing to live anywhere, do anything for his dream to come true.

You see, I didn’t just marry a love. I married the love of ten lifetimes, the love Shakespeare breathed and Wordsworth penned. I married my twin soul, the one made for me in a different place. From the moment I saw him, I’ve known he was my family, my heart’s home.

I married him because there was nothing else to do. He was where I belonged, the only place I’ve ever felt settled. Whether we’d been 19 or 85, different colors or species, it wouldn’t have mattered.

He was it for me, and I knew it down to my toes.

But then, I got sick.

I left him, ran around for months, broke his heart. He drove five hours to retrieve me from an emergency room. Then, he checked me into a mental health unit because even his love couldn’t save me.

When I finally stabilized, when we could finally start to put our marriage back together, the bride he married was gone. Lithium confused my mind, left me unable to read. Working part-time at a coffee shop was all I could manage. I slept 18 hours a day.

Cooking?

Cleaning?

Supporting his dream to become a doctor?

I couldn’t get out of bed.

He never went to medical school. He took a transfer to move home and love me. He took on the debt that nearly bankrupted us, from manic spending sprees and ambulance bills to my endless psychiatry bills. He cleaned the toilets and folded the laundry. To make more money, he drove two hours each way to his stepping stone job while I sat on my parents’ front porch smoking cigarettes on doctor-mandated 24-hour suicide watch.

All the way through those dark years, he looked at me with the same love as the day we got married. Because of him, because of the man he was and the way he loved his has-been bride, I found a way to love myself again.

Slowly, I’ve grown into a partner again. I started by emptying the dishwasher. I kept going to therapy, and I took my meds every day.

We didn’t think I’d ever be able to be stable enough to be a mama. We’ve had three boys. We’ve endured the loss of a child, preeclampsia, bed rest. We delivered our heart warrior who docs said wouldn’t be born alive. We walked through weeks in the hospital, open heart surgery and endless appointments with him.

We’ve held hands through funerals and baptisms, surgeries and ultrasounds.

If I could pick a bride for Jack, I would have picked a bride who wasn’t sick. But then, she wouldn’t have been me. And there’s nothing I’d rather be than his, for better or for worse.

We’re learning to ride the waves together on this crazy ocean of heart-pounding swells and breathtaking dawns.

I’m learning to be loved, for better or worse… or bipolar.

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If you or someone you know needs help, please visit the National Suicide Prevention LifelineHead here for a list of crisis centers around the world.

The Mighty wants to read more stories about your experiences dating with a mental 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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10 Things I’d Tell Myself Before Raising 2 Kids on the Spectrum

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Eleven years ago, my husband and I entered a developmental pediatrician’s office with our then 17-month-old son, Justin. We were both nervous and resigned, anticipating, and in some ways welcoming, the autism diagnosis we were sure our boy would merit.

Four years later, we would retrace our steps in a different state with our second son, Zach. On this occasion we were much less scared, even eager to get a diagnosis to help us to access services. It wasn’t that we were less concerned about the progress of our second child. It’s just that by then, we’d been doing the “autism gig” for the length of a presidential term, and we had a pretty good idea of what to expect.

Those four years had taught me indelibly what it means to be a special needs mom.

I learned so much from my eldest child, and then again from my youngest. I learned about my limits, and how to stretch them to accommodate my children’s needs. I learned about the endless boundaries of love, and how to summon patience I didn’t know I had. I learned so much, knowledge I wish I’d had at my fingertips when my first child was diagnosed.

If I could go back in time, these are the 10 things I’d tell myself about my impending journey of parenting two children on the autism spectrum:

1. You will revel in even the smallest increments of progress, progress you would not have noticed if your children were typical.

2. You will learn to always push your children to do a little bit more than you think they can.

3. You will learn how to be flexible (this one remains a challenge for me.)

4. You will worry about what happens to them when you’re gone. This one you will never conquer.

5. You will irrevocably alter your definition of what comprises a successful childhood.

6. You will learn how to ask for help (this one remains a challenge, too).

7. You will learn how to listen — really listen — both to your one son’s vocal attempts and to your other’s complete sentences.

8. You will learn, through lots of practice, how to be patient.

9. You will learn that the inability to speak does not mean your son does not have a lot to say.

10. You will learn, perhaps most importantly, to make time for yourself.

This post originally appeared on Autism Mommy-Therapist.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? 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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10 Ways My Kid With Autism Kicks Butt

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Here’s why my kid with autism kicks butt. I would say “kicks butt and takes names,” but he’s terrible with names.

Anyway, here is why:

1. He doesn’t break rules. He sees things as black and white, so when he’s given a rule, he sticks with it. If he has 10 minutes on a computer game, he will turn the game off right at the buzzer. If he has to do chores before he can go on a bike ride, he does them immediately without argument. The only exception is a rule like “no iPad after 7:30 p.m.,” but you know, what kid doesn’t wake up at 2 a.m. to watch animal videos?

2. He isn’t mean. When you make a friend in him, you make a friend for life. He will never say anything mean to you — unless he’s your brother, but then he instantly feels badly about it and gives a hug and apology. So that’s not so bad, either.

3. He can’t lie. If he tries to, his dimple and devilish grin give him away immediately.

4. He’s consistent. My son with autism doesn’t vary his daily activities very much. So if you want to know where he is after lunch on a certain day at school, you’ll know just where to find him. Or if he’s misplaced something, it’s easy to follow his tracks and find it pretty quickly.  

5. Small things are huge successes. He feels so grown up when he walks our neighborhood loop all by himself. When he wants one thing at a restaurant but has to choose something else because his desired item isn’t on the menu, he’s happy that we praise his flexibility. When he does homework at home instead of at school without a meltdown, his grin reaches ear-to-ear as we tell him how proud we are. Baby steps. But if you string enough baby steps together, soon you can look backwards and see how far you have come.

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6. BirthDAYS are birthday WEEKS. He celebrates each day leading up to his big day and walks with a little more spring in his step as that day approaches. Just looking at him makes everyone around him smile. It also helps my case when I tell my husband I’m entitled to a birthday month, but I digress.

7. He’s confident and doesn’t care what others think about him. When was the last time you met someone who didn’t care if someone giggles at them if their shirt is on inside-out? Or isn’t upset by people staring at them because they’re thinking of a movie in their head and mouthing the words? He is who he is. He does what he does. He’s happy. Negative people aren’t even a tiny blip on his radar. Unless someone says “Hi TJ!” or “How are you today?” — then, of course, he cares and is happy to interact. But if anyone is negative to him during his day, it’s like water off a duck’s back.  Unless, of course, he’s arguing with his brother, which is rare. We look at that as a good opportunity for him to learn how to stand up for himself. He’s pretty good at it.

8. He’s so, so kind. If he comes across a friend who’s sad or having a hard time, he will pat their back and say, “It’s OK, I’ve got your back.” Or if his brother has lost a soccer game, he hugs him and says “I know you’ll get them next time. I have faith in you.”  

9. He has a fantastic sense of humor. Yes, a lot of what he says is taken from a favorite movie or TV show, but if he finds a way to use it appropriately in an interaction with someone and the humor makes him and his friends laugh, what’s wrong with that? It may be an unconventional way of connecting with someone, but the fact that he recognizes it as a tool to make a connection is a victory in my book. Things get a little iffy when his potty-mouth humor comes into play, but he’s quick to learn what is and what isn’t OK to say in public.

10. He cares. He cares about others, he cares about himself, he cares about his town, he cares about animals and he cares about the world around him. He will stop to pick up litter if he sees it in his school parking lot. He will hug a friend or family member if he sees them crying. He hands out animal facts to people walking by the foot of our driveway so he’s not alone in his fight against poachers or helping endangered species. If he learns from my Facebook that a friend has scored a goal for their sports team, or gotten their braces off, or won a wrestling match, he will ask me to pass along his encouragement. His’s a sweet, caring, thoughtful heart, and he shares it often.

For these reasons — and so many more — my kid with autism is a fantastic, kick-butt kiddo. I’m so, so lucky to have him.

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How You Can Show Love to Mamas Who Had Empty Arms on Mother’s Day

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Freshly picked bouquets stacked in bunches, lovely hydrangeas planted in bright pink pots, cards spilling out into the store aisles and 1-800-BUY-HER-THIS commercials repeating on the radio: all reminders that Mother’s Day was on the horizon. Envious, I longed to be pampered, fussed over and honored. Desperately, I wanted to expect cards in the mailbox and notes in my inbox. I fantasized about getting one of those carnations they give out to all of the moms after church.

I wanted to be just like every other mama on Mother’s Day.

But I was not.

Mothers are special people. Well, all people are special, but only a mama can contain and grow life within her. Many sacrifice their bodies in order to nurture wholly new persons. And even those moms who don’t carry a person in their wombs, cradle sons and daughters in their heart. Mothers give up sleep, comfort and personal space in order to satisfy the needs of another. It’s no surprise that we’ve designated a day in order to shower them with attention and praise. Except for some women, like I was, Mother’s Day can seem more like a cruel date on the calendar than a joyful celebration.

My arms were empty that first Mother’s Day. There was no cooing babe swaddled in my arms, no wriggling toddler perched on my hip. I had no stroller to push, no diaper bag to haul nor cradle to rock. My firstborn had died the previous summer, so I bore no “proof” of my continuing motherhood. I felt like a mother, but I appeared to be a childless woman. Ashamed by my conflict, I was caught between two realities (the one my heart understood and the one the world saw).

An awkward position in a time when people are heralding children as a choice, the unseen child cannot be justified by many. Then others, who aren’t sure how to comfort a grieving mother, think it best to ignore what has been lost.

How I wished that I could remind everyone that my son had been real, not some temporary dream or imaginary person. He had been flesh and bone. And his very existence in the world, while brief, had changed me into someone new. That first son had made me a mommy, but his absence left me in a (painful) limbo.

I am not suggesting that we scrap the holiday in some ridiculous politically-correct attempt to “level the playing field.” No, mothers deserve recognition and we all need to remember the countless ways in which women give of themselves to care for their children. The truth is that when a woman becomes a mother, some part of her becomes forever entangled with her child. A lasting imprint gets left on her heart and in her mind.

Thankfully, my own mother sensed my grief that first lonely Mother’s Day and sent me a delivery of sweet-smelling roses. My husband knew my dilemma firsthand and he, too, gave his best effort to make me feel cherished. Those tokens of support and acknowledgment meant a great deal to me. They also allowed me to shed my shame and embrace the reality that I was truly a mama.

If you know someone who has lost a child, especially a mother who’s lost her firstborn/only child, please remember that it’s not too late to reach out, whether it’s to wish her a Happy Mother’s Day or otherwise. Send her a note, a text or a card, call her on the phone or drop some flowers on her doorstep to remind her that you recognize her motherhood. Tell her that no matter how long she was able to carry her child (whether in her womb or in her arms), she remains a mother forever.

A version of this post originally appeared on Blessings in Brelinskyville.

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The Emotion Parents of Preemies Shouldn’t Be Afraid to Feel

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I’ve been a little disconnected lately, partially because we’re busy and partly because I felt I didn’t know what to say. So I sat down today to really think about why. How can I have nothing to say when my head is always spinning with thoughts?

It came down to the fact that I realized I’m angry. And I don’t feel like it’s OK to say that out loud.

It’s been two years since my son V came home, and it often feels like this anger should be over.

But the truth is I’m still angry.

I’m angry about everything we went through.

I’m angry that V had to fight for his life.

I’m angry that we’re still so affected by V’s extreme prematurity.

I’m angry that we’ve been isolated for so long.

I’m angry that we’ve lost friendships because of it.

I’m angry that sometimes it seems hearing good news is harder than hearing bad news.

I’m angry that we’re still waiting for the “other shoe to drop.”

I’m angry that fewer and fewer people seem understanding of our restrictions. And even less people actually get why we have to do this.

I’m angry that we don’t know what the future holds and that the answer to most questions of “When will V do/be ___” is “We don’t know!”

I’m angry that we didn’t experience the typical rites of passage for new parents.

I’m angry that people keep expecting V to be the kid he would have been had he been born on time.

Guys, I’m really angry still. And that needs to be OK to say… even two year out.

If you’re a preemie parent reading this, I want you to know it’s OK to be angry. Whether you’re in the NICU, just discharged and home with your preemie or it’s been years. It’s OK. Even if it seems like other preemie parents have moved on, I want this post to remind you that it’s not necessarily true. We all grapple with different emotions at different times. There’s no one way to process this, and there’s no end point after which you and your preemie are “cured” of prematurity. It’s OK.

And if you’re a non-preemie, non-NICU parent reading this, I want you to know it’s OK that I’m angry. You don’t have to fix it or try to say something to make it better. When we made the decision to take all possible measures to save V’s life, this is the life we signed up for. A beautiful, wonderful, messy, complicated life — one I wouldn’t trade for the world.

This post originally appeared on Handpicked Miracles.

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