Our Special Needs Marriage: The Good, the Bad and the Ugly

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“Why is he doing this?” my husband yelled with evident frustration after seeing another hole punched into the wall and scattered remains of the bookcase on the bedroom floor.

“I think it might be because he has autism,” I answered sarcastically (because, you know, I’m super gracious like that).

This marriage thing… it’s not for the faint of heart. Add a little high-functioning autism with some acute sensory processing disorder on the side? Well, let’s just say it gets ugly.

I love my husband. He loves me – so much in fact that I’ve already felt compelled to write a couple of posts about how awesome and cool he is. And he is. Seriously.

And the reality is we’re two human beings, sinning all over the place and all over each other all of the time. Of course it’s a marital disaster around here, sometimes more often than not.

husband and wife laughing together

So in the interest of balanced disclosure, allow me to share some of the crazy that is just part of us being married while parenting two special kids.

1. We Blame Each Other… A Lot

It’s kinda weird but true. I know for a fact my husband isn’t the reason my kids are who they are (I can’t even hold him genetically responsible), but that doesn’t stop me from blaming him for not somehow making it better. We’ve had entire, long, drawn-out arguments over me thinking if he would just fix his work schedule or have a plan for the weekend, then everything would be fine. Seriously. I do this. Too often.

I’m not alone. He blames me too. Usually because he thinks I’m somehow not parenting the boys well enough to overcome their challenges (even though logically he knows it’s impossible to do). For example, a couple of weeks ago, Mick said to me he feels like he can’t leave the house without things getting crazy (I, being the astute reader of all things between the lines, took this to mean he thought I wasn’t doing a good enough job with managing the boys). I believe my response was a sarcastic, Oh really? ‘Cause it’s so much better when you’re here? Face it. Our life is crazy. It’s crazy with you. It’s crazy without you. Pick any day. It’s crazy!”

Not good.

What is good and has helped us recover quickly from these types of situations is to take some time to calm down. We try to never fight in front of the boys. They have enough stress. They don’t need us to add to it. Taking time to fight later when they’re in bed or otherwise occupied also has the benefit of allowing us to both calm down and think about what’s going on. Most of the time, one or both of us come back into the conversation with a little more grace for the other, and we can work it out from there.

2. I Totally Think He Doesn’t Get It

I’m being completely honest here. One of the things that affects our marriage is my pride. Ugh. I hate writing that, but it’s true.

My husband wants my respect. And the truth is, I do respect him. I respect him, and all too often I also think he just doesn’t get this whole autism thing, or the staying-at-home-with-kids-all-day thing, or how-to-help-a-dyslexic-boy-learn-to-read thing. Because of this lie, I often dismiss or downplay his perspective in parenting our boys. This causes all kinds of mess. It creates distance in our marriage. It makes him feel like he isn’t capable (even though he totally is) in parenting our boys. And I miss out on having a different perspective when I desperately need one.

He’s offered some of the best insights as to how to connect with our one son and his interests. He’s inspired our other son to see all of his gifts and not just the fact that his brain struggles to read. Most importantly, he’s done this in ways I never would have done or even thought useful at the time.

So, I’m wrong. He does get it. He gets it in his daddy way, which is different but no less good than my mommy way.

3. We’re So Sleep Deprived

Nothing creates an environment for marital strife, in my opinion, like not sleeping well for a few years. This goes without saying, but seriously, it matters. If affects the way we interact with the boys and even more so with each other. Our worst fights have been in seasons where we were getting a maximum of eight hours a sleep a night between the two of us.

husband and wife slouching on chairs

I wish we would give ourselves and each other more grace because of this . There are times I want to say maybe we should stop talking about this and go sleep for a few days and then see how we feel… but then duty calls, sometimes all night long. And that’s just how it is.

I’m grateful that when the boys do leave for visits with their dad, we purpose to lighten the load at home and work. We sleep a little later, eat out or fix basic meals and use the time to recharge, reconnect, and to actually sleep.

4. We Have Had to Learn To Be on the Same Team

We don’t always act this way, but we’re learning that two people fighting the good fight together, instead of at one another, is by far a better way to live. We sometimes have to remind the other that we’re on the same team, that we’re working towards the same goals, that we both want this to be a success. It seems odd that we need to, but we do.

It helps to remember that God brought us together for a reason. He made us husband and wife and gave us these unique little guys with a purpose. That matters to us. It’s meaningful in the moment. It takes our eyes off each other and fixes them on the things above, where the view is so much better.

husband and wife raising arms above their heads

I love this man. I love our marriage. It’s good. It can also be bad. It can also be ugly.

Special needs or not, what marriage isn’t?

This post originally appeared on Not the Former Things.

The Mighty is asking its readers the following: Can you share a moment on your special needs journey that strengthened your relationship or marriage? 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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Inspiring Video Offers New Way to View People With Autism

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Autism Spectrum Australia has launched a campaign asking the world to see people with autism spectrum disorder not as different, but as a different type of brilliant.

The organization released the video below yesterday in the hopes that it will spur more positive dialogue around the disorder, according to SBS News.

So often wonderfully talented, brilliant people with autism spectrum disorder are overlooked by society as being odd or quirky or obsessive,” Adrian Ford, CEO of Autism Spectrum Australia, told the outlet. “With our a ‘Different Brilliant’ campaign, we hope to inspire a wider understanding and respect for how people on the autism spectrum are just like you and me, in many ways, but with their own uniquely brilliant take on the world.”

The powerful 90-second film features people on the spectrum and offers a message of acceptance and inspiration.

Enjoy the video below: 

 

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Why I Don't Have the Luxury of Anger

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You don’t get the luxury of anger as a parent. Anger feeds chaos and disorganization and hate. I don’t get to be angry because my son, Kreed, does this or that or doesn’t do this or that. When I’m angry, it solves nothing. Angry wastes my time. It’s unproductive. It doesn’t make me happier.

It takes away joy. It takes away happiness. It sucks the life out of everything. When I rage in anger at any of my children, inevitably it makes the situation worse. Kreed doesn’t know better. Even if he does, he can’t always comprehend his consequences and his brother, who has Asperger’s, is still unable to see longterm consequences.

I want to be angry at so much. Most people don’t ever hear me talk about this. I’m patient, I’m kind, I teach. I’m that way because I don’t spend a lot of time in anger or wondering what if. As Kreed has taught me to live in the now, it lessens the anger — all I see is what is in front of us right now, and I have to deal with it.

Sure, some people can be angry that then I don’t have these super huge dreams for the future. But why? I can’t predict the future. I can’t change the past. I have my present. I can improve my situation from the past, and I can plan for the future. So I figure it’s win-win.

I could rage against life on how unfair it is to Kreed. I could rage about how I wish our life could be different — that if things had gone differently, he would be driving or dating or thinking about college. But why? It’s not our present. It’s not our life. My life is giving Kreed the happiest life possible and to always, always teach him so he will continue to interact with his environment and people in the way he wants. That’s our life together. I can’t separate my life from his to any meaningful degree because we’re connected on levels most people would never understand.

Can I go out and have fun while he enjoys his respite time? Absolutely. I can leave Kreed for various lengths of time to have a life outside of him. But life is always circular, and after those brief moments of time, everything comes back to how it is daily.

A lot of people fight in the autism world. Some fight against the diagnosis. Some fight about the language of autism. Some fight about the spectrum of autism. Some fight about blessings and curses and vaccines and therapies. At the end of the day you will not see me engage in any of this. Why? It has no bearing on my life with Kreed. It doesn’t matter anymore what started Kreed down this path, only the progression. I don’t care what celebrity has this or that because they don’t live in our life or help in any way. I don’t fight about therapy because Kreed is 17 and we know what works and what doesn’t, and I don’t care if other people do the same or not — our kids aren’t the same. I don’t have the luxury of anger in our life for our actual life so I certainly don’t have the luxury of anger for things that have zero bearing on our life. I’m too busy immersed in the life every day, 24/7 to give a care about what anyone else is doing or how they feel about some celebrity who may or may not be on the spectrum.

I don’t have the luxury of imagining a life that’s different or better. The life is how it is. Whether it’s helping Kreed succeed in communication or his brother to succeed in being independent — they’re the children that were brought into this world with the promise they would be loved unconditionally and supported to fulfill their dreams. It doesn’t matter if autism entered the picture or Asperger’s or Kreed’s thousands of medical issues. It just is. I can’t change it, but I can make things better. 

Some nights I might cry. Some nights I might yell. I’m only human. Some nights I feel numbed out. Caring for Kreed is a 24-hour-a-day, seven-days-a-week job. For life. Some days things go easy. Other days he rages without cause, and I just keep him safe. I always try to figure it out. The more I figure out and teach him, the better he is in the long run. I don’t get angry for long because time is too short and precious for that. 

Then I would miss moments like these:

mom and son hugging

Other nights I write blogs like this because I have to find meaning in our life and existence when it seems there’s too much rage and poop or pee or nakedness or days and days of sameness. But it’s not about the moments that make me angry. It’s about the moments that make me happy and him happy.

And I know in the end, our life is enmeshed and for whatever reason we’re working hard to show the world Kreed and what we do to help him be successful. We’re working hard to do what people didn’t think was possible and for people to understand that our kids have no limits. The more I can help Kreed handle his emotions, learn to communicate and enjoy his time out in public, the better our life is over all — this is just fact. So I get up each day anew and strive to make it better than the day before. If I was angry yesterday, I try to find more joy in the new day.

Or I write. I write and I keep it real. I write and I get my feelings out. I write our truth. No one else’s. Just ours. Maybe other people can find commonalities. Or maybe you just love Kreed’s dimples so you read about our journey. But at the end of the day, it’s our truth. Nothing more, nothing less. I will never be pulled into these endless stories that appear in my newsfeed because it’s not part out our truth. At this point in our life, our truth is all I can handle.

And for the boys affected and struggling, I don’t have the luxury of anger because at the end of the day it solves nothing for us. And we need solutions and learning and teaching and happiness and joy. That is our truth.

Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty.

This post originally appeared on Kreed’s World.

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To the Classmates Who Sign Up to Sit With My Son at Lunch

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My son Tate has autism. He’s 13 and in the seventh grade. Tate performs at a grade level far below his peers, academically and socially. I could and should write thank you notes often to each and every one of the teachers and staff involved in Tate’s individualized education. I definitely don’t say it enough. Today, however, I am going to say “Thank you” to the seventh grade class at Baldwin City Junior High School.

There are advantages to living in a small town sometimes. Tate will graduate with a class of approximately 100 students — he began kindergarten with about 20 of them. He had the same kids in his class through third grade. And living in a small town has produced opportunities for us that many families of a special needs child wouldn’t have. I knew all of Tate’s teachers and many of the parents and children. I was often in the classroom and able to educate Tate’s classmates about autism and Tate’s differences. I wanted full disclosure and often asked that the privacy policy be ignored. I talked openly about Tate’s disability and urged teachers to do the same.

From the beginning Tate’s been treated with respect and kindness. His classmates could see he needed help with many things, and there were always lots of willing helpers available. At the end of their first grade year, I thanked the children for being such good friends to Tate and asked them to promise me they would be friends all the way through high school — they’ve kept their promise thus far.

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For five years Tate has had a lunch buddy program so he can receive social instruction from an adult coach while surrounded by peers. In elementary school, students had a chance to sign up to be a part of it with their parents’ permission. There was always a waiting list and never a lack of enthusiasm for eating lunch with Tate. The program has evolved somewhat. Now, for part of the week, Tate sits at a table with peers and no adult. Other days he invites a friend or two to eat with him and a teacher at a smaller table so he can work on social skills. Rarely does a student ask for a rain check. If Tate calls, they answer!

So many children with special needs have to worry about bullies. So many children with special needs are lonely or forgotten. Tate has never been bullied — not even once that I am aware of — and many of his peers call him “friend,” although Tate doesn’t often reciprocate their kindnesses. Tate’s understanding of social skills and reciprocity is greatly lacking. His peers know it, and they accept it. They give, asking nothing in return. They include Tate whenever possible. They help him with tasks that are difficult for him. They teach him and encourage him. They make him feel like one of “the guys.” It doesn’t matter that he comes in last in all the races. I’ve heard them cheer as if he’s crossed the finish line in record time! It doesn’t matter if his presentation is short and simple compared to theirs; they’re excited to see Tate’s achievements even when they’re small.

They treat Tate like he’s a valued member of their class, an equal. For this, I thank them. I thank these students for being kind to Tate and for making his life easier. I thank these students for making my life easier. I don’t have to worry or wonder about Tate while he’s at school because he has friends who look out for him. Thank You Baldwin Bulldogs, class of 2020.

The Mighty is celebrating the people we don’t thank enough. If you’d like to participate, please submit a 400- to 800-word thank you note along with a photo and 1-2 sentence bio to [email protected].

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When My Son With Autism Locked Me Out of the House

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[Writer’s note: This is one of the first full essays I wrote about my kid. It’s an old story from ten years back now and is still one of my favorite memories.]

Standing on my back patio, I watch my 5-year-old son through the sliding glass door. He bounces around the kitchen on his large blue exercise ball, happily unaware that he’s just locked his mother out of the house.

boy sitting on ball

 He didn’t mean to lock me out. I stepped out — just for a moment — to throw something away, and I left the door open. After I went around the corner of the house, my son simply returned the door to its normal state: closed, with the latch pointed down. That’s how the handle always looks from the inside. Like many other autistic people, my child exhibits a keen awareness of his surroundings and tends to fix things he deems out of place. Lights on that should be off, books rearranged on shelves, doors that must be closed and latches returned to their down and locked positions.

“Unlock the door, hon,” I say, shaking the handle. He rolls his ball over to the door and presses his palms against the glass. He grins at me and sits back down on his ball. I instruct him: “Pull up,” and mime lifting the latch. He slides off the ball and copies my hand motions in the air, his fingers hovering inches from the handle.

“OPEN DOOR,” I demand, failing in my attempt to keep the growing worry out of my voice. My son laughs and repeats, “Open door!” But he doesn’t understand.

It all comes down to this — all the hours of behavioral and speech therapy, doctors’ appointments, IEP meetings and filing cabinets full of data sheets and treatment goals. If my son founders on a simple instruction to unlock the door, what does it matter if he knows his colors, his shapes, if he can recite the alphabet forwards and backwards? What does it matter if he expands his limited verbal ability to place “I want” before a request for juice or a cookie if he fails to comprehend my words when danger looms?

I run across the street to my neighbor’s house to call my sister-in-law, the only person with a spare key since my husband is out of town. Her phone goes to voicemail. I race back home, convinced my son is either upset by my absence or getting himself into some kind of trouble. I find him perfectly content in the air-conditioned house, bouncing on his ball near the kitchen table, taking bites of his lunch. Dear God, please don’t choke.

I go back to my neighbor’s house to call a locksmith, cursing myself for not hiding a key outside. The locksmith estimates his arrival at 20 minutes. How many things can go wrong in 20 minutes?

I return to my patio to wait where I can watch my kid behind glass, trying every so often to get him to let me in. From my isolated vantage point, the newly exposed hazards of my once-child-safe kitchen mock me. I begin to strategize. Which window will I break if he grabs that sharp knife off the counter or if he climbs up on the still-warm stove? Can I throw this metal patio chair hard enough to break the glass if he falls off that damned ball and cracks his head on the hard tile floor? Oblivious to the threats that surround him, my son laughs and bounces and taps on the glass between us.

Just as I reassure myself that at least I can keep an eye on him, my kid leaves the room. He runs into my bedroom where, of course, the window shades block my view. I cannot see him, but I hear him jumping on the bed, a favorite pastime that I instantly redefine as reckless. He yells, “Jumponthebed!”— one of the rare times he calls for me to play. I stand helpless to respond.

Then it happens. My son reappears, running into the kitchen and over to me at the door. He pulls on the handle, notices the latch and — without hesitation — flips it up and slides the door open. I’m stunned by the speed at which my dilemma evaporates. My kid, in turn, looks bewildered by his mother’s enthusiastic and borderline hysterical response. I cry and hug and sigh and he just smiles, as if to say: It’s about time, Mom, what were you doing outside for so long?

It is not always about ability. More often it’s about motivation. My child could easily learn how to unlock the door; he just needed a reason. People with autism spectrum disorders sometimes find it difficult to see the world from another’s perspective — my need to get inside, to get past that locked door, didn’t concern my son. Until it became his need.

Years later, this experience still shapes my interactions with my child. Of course, we moved the goal of teaching the instruction “unlock” to the top of the priority list (and yes, we now hide a spare key). But, the most important thing I can do is to give my son ample reason and motivation to use and strengthen his abilities; to discover what will entice him to open the doors that stand between us, waiting to be unlocked.

This post originally appeared on Stay Quirky, My Friends.

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To All the People We Underestimated Throughout Our Son's Autism Journey

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Since my son, TJ, was diagnosed with autism at age 2, our family has been immersed in paperwork, education plans and an entirely new language filled with terms and abbreviations that would make your head spin.

They certainly made ours.

And if it weren’t for our team leaders, we would have been lost.

The earliest team leaders laid the groundwork for us. When we were blindsided by the fact that our precious boy needed help, they held our hands and helped us out of the fog. They set up all the appointments for diagnosis. They tirelessly explained terms over and over again until they made sense. They set us up with the right people to give TJ the best chance at success.

Then we were passed to the preschool team and a new leader. She’d already been working with TJ, which made the transition seamless. That team gave TJ the most positive beginning to what it meant to go to school.

We’ve since been passed from team to team as TJ has grown. Each time we thought, “There’s no way our new team leader can replace our last one.”

Each time we were proven wrong.

So to every team leader we’ve had who made us feel like we were being heard, who worked out problems with a smile, who spent hours behind the scenes doing paperwork for our boy, we want to say a huge thank you.

To Liz, Laurie, Kristeen, Nicky, Sue, Donna, Alda and Shawn, we’re forever grateful.

Thank you for always being available and for responding to voice messages and emails so quickly.

Thank you for always saying, “There are no stupid questions.”

Thank you for reminding us that when TJ shows signs of regression, it usually means a leap forward is soon to come.

Thank you for your guidance through this crazy maze called autism.

Thank you for loving TJ and for putting up with his involved family.

Thank you for all you do. Every day. For TJ and for every child you’re giving a promising future to.

We love each and every one of you, always.

Love, Lauren and Sean, TJ and Peter

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 For all of November, The Mighty is celebrating the people we don’t thank enough. If you’d like to participate, please submit a thank you note along with a photo and 1-2 sentence bio to [email protected]

Read more from Lauren Jordan on The Mighty:
A Letter to My Son About His Big Brother With Autism
Autism and High School: What to Do When the Honeymoon Period Is Over
When I Had to Follow the Same Advice I Give My Son With Autism

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