I generally shy away from writing about my relationship with my husband. Writing about something creates a fixed point, and I would much rather leave my relationships flexible, allowing for an ebb and flow that writing sometimes does not allow.

However, getting our son’s autism diagnosis significantly affected my marriage, and I think that is important to talk about.

The impact was enormously positive, and we still enjoy its benefits today.

After years of trying – and failing – to find the best way to teach my son right from wrong, rewards and consequences, social norms and to simply keep him safe, his diagnosis was a source of relief for us. It took a huge weight off of our shoulders to realize it wasn’t us – we were not bad parents.

We have become more patient with each other, no longer laboring under the painful feelings of “What have we done wrong?” and What are we doing wrong?” After reading so many parenting books and listening to so much advice, we finally feel like we are on the right path. Now, we can help our son on this path, teaching him right from wrong, understanding what motivates him and giving him tools to function within social norms. We have a shared understanding about what we need to do and successfully work as a team.

The diagnosis opened our eyes to who our son really was, enabling us to pair our love of him with true understanding. In the depths of my soul I know there is no greater gift we can give our child than honest acceptance of who he is.

Together, we’ve had to make some hard decisions — the decision for me to leave my out-of-home job and its steady income in favor of consulting work from home. This meant both of us would work commission-only jobs. It was a risk, and one that we might not have been brave enough to take if it weren’t for the courage that came from knowing it was what our son needed.

I had to do the math to recall how long my husband and I have been married – 12 years this month. It’s not that we don’t care, but because the most important thing that came out of our son’s diagnosis is that we learned to take things one day at a time.

When you’re taking things one day at a time, you don’t look too far behind and you don’t look too far ahead. There is a certain kind of zen that comes with that, a zen that feels good and right.

That is good for all of us.

A version of this post originally appeared on Autism Mom.

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Autism is a vast and complicated diagnosis. Add teenage hormones to the mix and you’ve got a whole new level of behaviors. While I’m in no way an expert on every single person with autism, as a mom with four children on the autism spectrum, here are some suggestions that may (or may not) help you communicate with a teenager with autism. Since my teenage sons are completely verbal, my tips are geared more for the kiddos with autism who have acquired speech.

1. Skip the sarcasm.

Many individuals on the autism spectrum are very literal, and sometimes don’t get sarcasm or care for it. Since they can have a hard time making eye contact and looking at faces, they might miss a telling smirk or smile. Your teasing or joking may go over like a lead balloon. Sometimes though, the opposite poses a problem: My teenagers often take a joke too far, improperly using sarcasm, and are shocked when they offend someone. To them, it was merely a joke. With humor, try to be as straightforward as possible.

2. Don’t ask too many questions. 

My teenagers on the spectrum hate to be quizzed and consider your questions inane. Often times they feel like they’re being interrogated. In this case, less is more. Questions like: “How’s school?” or “Who is your favorite teacher or subject?” always fall flat with my teenagers. Want to get them to talk? Ask about their strong interests, and they might be willing to talk at great length.

3. Bring solid evidence to your rationalizations.

Because my teenagers have a hard time recognizing social hierarchies, I avoid saying things like “Because I said so!” and “I’m the boss.” This kind of language typically doesn’t work. I always have an easier time using facts, rules and laws to back up why things need to be a certain way.

4. Don’t scold a teenager’s behavior before understanding what it is.

When a teenager with autism doesn’t respond to your questions, avoids eye contact or walks away without a word, don’t assume her or she is being rude. Social interaction and eye contact can be difficult for people with autism, and even physically painful for some. Some have processing issues and it may take a few moments for them to cognitively process what you said before they are able to respond.

If you see behaviors like rocking, tapping, banging, picking, covering their ears or anything else you think is “strange,” just ignore it and stop staring. They’re self-regulating in a world that can be loud and overwhelming to process, and the last thing they’re thinking about is whether or not it’s bothering you. Let their parents, therapists or teachers help them learn appropriate behavior or coping mechanisms when in public.

5. Text messaging can provide better communication than talking on the phone.  

In my experience, the best way to communicate with a teenager with autism on a phone is through text messaging. Now that I think about it, the best way to communicate with any teenager is probably through text, but I’ve found that when you have a teenager with autism, it could mean so much more. You may even be surprised at the quality of the conversation. They might be more relaxed and willing to respond.

6. Don’t expect them to “perform.”

There’s this great saying: “If you’ve met one person with autism, you’ve met one person with autism.” Don’t assume everyone on the autism spectrum is a little Rain Man. Sometimes when you ask my kids about their talents or interests, my teenagers will act like they haven’t a clue what you’re asking, magically forgetting all their geography knowledge, their ability to play drums or their second-degree black belt karate skills. Personally, I think it’s their particular devious sense of humor.

7. Be patient with them.  

I know they might do and say things you find strange or different. But please, be patient with them. They aren’t spoiled brats, purposely disobedient nor defiant. They’re just learning how to survive and cope in a complicated world that often overwhelms them.

8. Accept them, autism and all.  

Try to enter their world instead of always trying to force them into yours. Be present with them; they’ll know you’re there. You may be very surprised at the conversation and the joy expressed from the teenager who is happy with your effort.

A version of this post originally appeared on Our Version of Normal.

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Have you ever watched “Little People, Big World” or “The Little Couple”? The popularity of these programs demonstrates the public’s fascination with dwarfism. This rings true when I go out in public with my son, Samuel. People frequently ask about his diagnosis.

Dwarfism is defined as a person who has an adult height of 4 feet, 10 inches or shorter. There are an estimated 200 types of dwarfism. Most people are aware of this condition but know little else, giving rise to the curiosity.

Samuel’s dwarfism is not inherited but rather the fate of a random genetic mutation. His condition was through no fault of my own. Drinking soy milk while I was pregnant didn’t cause it. Falling heavily and landing on my knees didn’t cause it. I’d also venture to say that my advanced maternal age (or my husband’s age) didn’t cause it, although some theories on the Internet state otherwise.

I receive messages from people worldwide about thanatophoric dwarfism (TD, also referred to as thanatophoric dysplasia), which is what my son has. One dear lady whose child had TD believed for months it was her fault. My heart broke for her. She experienced great relief when I shared the truth with her.

The mutation causing thanatophoric dysplasia dwarfism is described as “lethal.” This diagnosis was discovered in 1967 by Pierre Maroteaux and his coworkers; they used the Greek term “thanatophoric,” which means “death-bringing.” At 9 years old, my son’s young life has already defied the odds. He is my little miracle Mann.

Samuel’s rib cage is so small it fits in the palm of my hand. He is 25 inches long and weighs 22 pounds. His short arms and legs, portly belly and trident hands are as soft as a baby’s skin. His flat button nose is utterly kissable.

The primary concern at birth was his inability to breathe. And though he needed a ventilator, we were blessed to bring him home after six months. Several years later, to my great surprise, he no longer needs a ventilator to breathe.

My son’s life expectancy is a bit of a mystery, which I believe is determined more by the miracle of his life rather than by what a textbook states. I’ve had the blessing of meeting other TD families who have blazed a path to hang my hopes on. The oldest survivor I know lived to be 26 years old. Will my son exceed this threshold? My momma’s heart says yes. But I believe only God knows.

As we meet people and are asked questions like, “Who is Samuel?” how do I respond? I can offer statistics like the occurrence of TD being 1 in 20,000 to 50,000 newborns or throw around Greek words and definitions, but I’d say the answer is in his smile. “Here I am,” his smile suggests. “Watch me thrive.”

A version of this post originally appeared on A Miracle in My Living Room.

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When you’re pregnant, you have amazing dreams about your roly-poly baby with cute baby fat rolls and chubby cheeks. But when reality sets in, those dreams change.

Bella was born tiny. In fact, she was one of the smallest babies on the neonatal intensive care unit floor. When you’re in the NICU and have a baby who is growing unbelievably slowly, ounces can seem like mountains. So you hope for grams. That was the unit of measurement we used to weigh Bella during the first 18 months of her life. A gram is about the weight of a paper clip. 

We were ecstatic when Bella gained 10 grams in a week, while other parents got upset if their baby didn’t gain a pound in a month. Trips to the pediatrician were uncomfortable and odd. Other moms sitting there got upset because they thought their 3-month-old babies seemed small at 12 pounds. They would me ask how many weeks my baby was. I told them Bella was 9 months old and weighed 6 pounds. The looks I would get made me laugh.

You know you’re in a very special group when you need to continue to weigh your baby in grams after you leave the NICU. There aren’t many of us. Most people use ounces and pounds before they leave the NICU. Staying in grams doesn’t mean anything bad, it just means you get to keep that little baby a bit longer. No one should feel singled out for it.

When we decided at 18 months to start using ounces and pounds to weigh Bella, it seemed weird. Learning to convert became a new skill for us.

Bella has reached a point now where until she fluctuates within a few ounces most of the time. This is fine with us and her doctors. She is healthy and proportional for her size, so everyone is happy.

A version of this post originally appeared on Our Tiny Fighter.

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There I was, sitting at my son’s baseball game, watching my 7-year-old daughter dig through the grass with purpose. She was picking through small white flowers, her face inches from the ground, inspecting each one carefully, crawling, digging and leaving behind any that were not the exact shade she had set her mind on. This process comforted her, serving as a distraction from the noise of the game and the constant, yet unpredictable, screams from the crowd. I looked from side to side to see who was watching. How long would it be before someone pointed out her odd behaviors?

“Chloe, get up please.”

No answer. She was too deep within her own self-protection. But instead of seeing this as a strength, I slid down in my seat and gave into my own weaknesses, reaching for my phone to distract myself.

I thumbed through Facebook, not really reading anything in particular. The faster she dug through the grass, the faster I thumbed my screen, mimicking her panicked motion. What was easing her fear was feeding into mine, and just as I caught myself brimming with anxiety, a title on my news feed caught my attention: “Autistic Kids Need to be Able to Talk About Disability.” I stared at it for a few moments, indecisive if I needed to open it. I mean, as her parent, her well-educated parent, I knew all about this, right? Her father is a public school teacher. I have college education in psychology. Clearly we allowed her to talk about her autism. Squeamishly slouching in my chair, hiding while my daughter quietly comforted herself, I realized, maybe not.

Two paragraphs in and I know I’m in trouble. I have already begun analyzing all of my interactions with my child, and I am failing miserably by my own interpretation. In all of my attempts to try to teach her to not self-pity or use her autism as an excuse, I had avoided the topic of autism being a disability at all, reducing it to a brain that just “thinks a little differently.” The question was, why? The answer was going to take a lot more soul searching to figure out.

Our family is no stranger to disability. With two other children with a neuromuscular disease that limits their organ functions and often times mobility, we are well versed to the wheelchair “stares” and the leg brace questions, and we are perfectly comfortable hanging our little blue wheelchair friend from the van mirror. But why is it so different for me to refer to our daughter’s autism as a disability, and why had I not even thought of it until now?

I continue to read as Chloe continues to search for her perfect little white flowers. When I reach a list of things that parents need to help their children with autism understand about themselves, my stomach begins to churn. Unfortunately, it was much more than indigestion from the nachos from the concession stand. It finally comes flooding in that while I knew all of these things about autism, I truly have not accepted that any of them belong to my daughter. How could it be that all of those years ago I was not shocked by her diagnoses, but still have not come to accept it? How could I defend her diagnosis to others, but still not believe it myself?  How could I treat her autism like something we needed to overcome, instead of teaching her to accept her autism as a disability and embrace the life she was given? It was not a good feeling, but served as a much-needed wake-up call.

I slipped my phone back into my pocket and sat back up straight. I laid my eyes back on my little girl, for the first time in a long time seeing her. I wanted to scoop her up and hold her tight. But I knew that wasn’t what she needed. It was what I needed. That was the first thing that needed to change in our relationship. We were going to hit the reset button right there and then, and it was going to start with me. I closed my eyes and took a deep breath, releasing as much guilt as I possibly could, knowing that harboring it was not going to do us any good. When I opened my eyes she was standing before me, a fist full of white flowers, waiting for me to take them.

“For you, Mommy.”

My eyes welled up with tears. How many other things had I ruined by not being able to accept her autism? To think, something I so passionately wanted to stop, thought I needed to stop, became something so beautiful. 

A version of this post originally appeared on What Do You Do, Dear? 

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It’s not always easy being the man in my life. I’m sure every woman can say that with some modicum of truth. I am no different.

But I can say that dating me, a person with an obvious physical disability, is sometimes an adventure in ways that dating someone else might not be.

1. Strange people might follow us.

I am often approached by people who are homeless, random people on the street who take an unsolicited interest in my life, or the occasional passerby. This phenomenon generally occurs for one of two reasons:

a) The person wants to tell me how inspirational I am or tell us how inspirational we are. This happens everywhere. At the movies. At the grocery store. Stepping outside my front door.

And the “inspirational status” won’t just apply to me. Once strangers ascertain the fact that we are together, they’ll let you know how wonderful you are, too.

“Oh, you’re such a good person,” they’ll say. Or, “You’re so wonderful for helping her.” Chances are, at the time they say this, you won’t be doing anything particularly wonderful or helpful or good, but strangers will want to give you an extra gold star just for hanging around me.

(I’m not saying you wouldn’t deserve one, but I’m saying it would be more for putting up with my sometimes irrational thought processes and enduring watching “The Bachelor” on Mondays than it would for carrying my coffee or getting my arm braces out of the car.)

b) The second type of concerned passerby will approach us trying to help. They might give us unsolicited advice on the simplest things — things we’ve done many times before — like getting groceries into or out of the car, going up steps or walking in the rain. They will want to offer their assistance.

This type of approach bothers me much less because these people are just trying to be helpful, to do something good for their fellow man.

However, these interactions can be a bit intrusive and stalkerish at times. Case and point: I went to Starbucks last week with a friend. I got my order and tucked it in the front pocket of my bag with a straw as we headed to the car. A man followed us outside from the store, almost to our car, and asked my friend, “Where’s her order?” He had not seen me pick it up, I guess, and was concerned that he didn’t see her carrying it out.

I told him, “I have it right here,” and pointed to the cup in my bag. He never addressed me, and he left.

2. Which brings me to my next point: People will talk to you to address me.

They will ask you what I want to eat at a restaurant. They will hand my purchases to you. They will treat you as though you are speaking for me. They will often assume you are my brother, personal caregiver, cousin, assistant, whatever.

Sometimes this is frustrating for me. Sometimes it will be frustrating for you. But try to stay calm. These types of people are clearly ignorant… because if they can’t see why someone would want to hang around me for more than a paycheck, they are missing out.

Of course, you should also be aware that if you show me any type of affection in front of one of these people, they will gawk. According to their assumptions, people with disabilities don’t date. We aren’t sexy. We don’t get married. And we can’t have families. You’ll be debunking myths every day, just by your decision to be with me.

(Hey, maybe I should give you a gold star.)

3. I’m a person with a disability. I’m proud of it, it’s a part of my culture, and I want us to share that.

Be aware of this fact. It is not something I want to change. It is not something you need to make allowances for. It is beautiful and natural, and a part of me that has helped me build many of the personality traits and characteristics that I love about myself. It is a part of me that follows me everywhere: to work, at home, out on the town, etc. You may find yourself introduced to new ways of thinking because of it, such as:

  • People-first language.
  • Crappy para-transit services.
  • Incessant planning for extended travel.

My disability pride is a part of me I want to share with you. I want you to be proud of it too because it is part of my culture, and if you are with me, it will become a part of yours.

Be prepared to listen to my rants about inadequate housing, employment discrimination, rights of parents with disabilities, inaccessible buildings, ignorant people at work, websites that blind people can’t use, the whole Netflix debacle, whatever. These are things that are important to me. They are a part of my fight for civil rights. For mine. For yours. For ours.

But even though I am a passionate advocate, I will also be your girlfriend. The girl who loves lazy Saturdays, cooking for you, sending packages, church on Sundays, coffee, Mexican food, chihuahuas, the French language and music.

The girl who thinks morbid thoughts at night, who is so concerned about your well being that she sometimes sounds like a mother, who will make sure she tells you every day how important you are.

The girl who does what she says she’s going to do, says what she means to say (except in cases of extreme hyperbole) and always, always, always loves you with her whole heart.

Yes, it’s not easy being with me. But I’m 100 percent worth it.

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