Recovery from a Marriage in Crisis

“No one sees the chaos that autism does to a family or to marriage. No one sees because we are often isolated and just ‘dealing with it.’”

Fourth in our series on the impact of severe autism on marriage

By KE

“You have never been kind.“ 

As soon as the words left my mouth, I felt a huge weight lifted off my chest that had been pressing for years. 

My husband and I have 3 children and 2 of them are on the autism spectrum. 

I made a choice to homeschool them when the world fell into chaos due to a global pandemic, and I regret that choice. The pressure of being a mother, a caregiver, a wife, and a teacher all at the same time became crippling to my marriage. I began to push my husband away — push him away to focus on the kids and their needs. I reasoned that he was a grown man and could take care of himself, and my absence caused him depression. This depression led to excessive drinking, but honestly, it didn’t phase me because I was too busy being a mom and a teacher and a caregiver to my two sons on the autism spectrum — all the things except for being a wife, and it almost cost me my marriage. 

In hindsight, part of the problem was not having an ounce of energy to even care about his depression. I didn't have time to care because I was trying to survive the aggression, lack of sleep, and the emotional stress our sons were putting me through. 

They weren't putting my husband through this trauma because he checked out. He went to work, quickly ate dinner, and then headed out to the garage where he engulfed a case of beer until it was bedtime. 

My husband never directly said autism was part of the problem in our life, marriage or even some of the cause of his depression or drinking, and truth be told, he probably never will, but I believe wholeheartedly that if autism wasn't part of our life, we would have been different. He would have been different. 

Last December my husband demanded a divorce, and to be honest, I saw it coming as I watched him unravel and quickly become someone I didn't love anymore. Someone I wasn’t willing to fight for anyone.  

I hated him for not loving me more. 

I hated him for not fighting for us. 

I hated him for wrecking Christmas. 

I hated him for days and then something strange occurred. 

We started to talk one night. We enjoyed one another’s company and didn’t try to fix any of our problems. We didn’t strategize about this meltdown or how we were going to get our kids to sleep, we just talked. We both had a lot we needed to get off our chests. 

We talked for days which turned into weeks which slipped into months which quickly turned into “let's be better” — together. 

The divorce was removed from our conversations. 

My husband became a better version of himself and so did I. 

When the world went into chaos, our chaos was simply amplified. The problem was no one could see it except for us. No one sees the chaos that autism does to a family or to marriage.  No one sees because we are often isolated and just ‘dealing with it’; dealing with depression through coping strategies like checking out and drinking. No one sees and that became a huge part of the problem. 

This past year has been a journey of new; a new home routine and educational plan for our three children and new for me and my husband because now we actually talk about our feelings without becoming combative with our words. We talk through our pain and chaos rather than using numbing strategies and that’s a win not only for our family but for our marriage. 

About: KE lives in Canada with her husband and three kids. She spends her time advocating for better resources, support, and funding for the individuals who are diagnosed with cognitive disability or physical disability. K has a love for helping people and sharing her story through blogging online about being a mother raising two boys both diagnosed on the autism spectrum.

“My spouse and I don’t have the time to spend with one another because our world is consumed with autism.”

“Honestly, my marriage would thrive with more respite options, but we simply don’t have the luxury to invest in one another because who will care for our son?”

Third in our series on the impact of severe autism on marriage.

By Jessica Ingle

My son Zeke is 6 years old. He was diagnosed with severe autism at age 3, and he is nonverbal. There have been six nights in my son’s life where my spouse and I have been able to get away with one another. Two of the three occasions were in the same town we live in - so no, not some tropical paradise we were running away to! We were desperate and delirious from a lack of sleep because Zeke doesn’t sleep — never really has. Even as an infant, he would cry for hours, and most days, so would I.

My wife and I would take turns with him throughout the long nights so that we could attempt to sleep if the screaming wasn’t too loud. We were desperate for a full night of rest together so we begged our parents to keep Zeke so that we could get a hotel room close by. Yep, that was the goal of our getaway — sleep. 

Our ten-year wedding anniversary was recently approaching, and we planned to celebrate by vacationing in the Bahamas for four nights. Not for weeks or even a week - simply 4 nights was all we allotted for ourselves. As our departure date inched closer, I teetered between being ecstatic and terrified. I was nervous to leave Zeke, but I had his schedule and routine written down minute-by-minute for his grandmother. 

Zeke’s schedule is extremely busy and has many moving parts. There are therapies, school, our work, his evening meltdowns due over-stimulation and hopefully sleep. Every day is different but a constant merry-go-round. Zeke wakes up and sometimes eats breakfast and then we figure out what clothes will be tolerated for the day before brushing his teeth. This can take up to 20 minutes because he often refuses. There is never a morning to just lay around and be lazy together due to work, school, and therapy obligations, but the evenings are the hardest. There has to be a set of eyes on him at all times because he is an eloper or will jump off the back of the couch and hurt himself or accidentally break a picture frame and cut himself. Most often, one of us cooks dinner while the other entertains Zeke and then we switch roles for clean up. Bath time is a two-person job as he doesn’t enjoy them most nights. Once all of this is finished, we give him medicine to help calm his brain and induce sleep. He usually goes to sleep by 9:00 pm, and if we’re super lucky, he will sleep until 6:00 am, but most nights it’s closer to 4:00 am when he wakes up and then our day starts all over again. 

But 36 hours before we were scheduled to leave for our anniversary trip, we landed in the emergency room. Zeke was constipated and projectile vomiting. My spouse ran home to gather supplies for a hospital stay while I settled him into our room. I canceled our tropical vacation the next day. Thankfully, we were given a credit and can reschedule.  We’re hopeful that we can go next year on our anniversary. Fingers crossed. 

Zeke was in the hospital for 6 days to clear the impaction which meant we stayed the entire length of our anniversary trip. While there’s nowhere else I would rather be when he’s sick, it stings a little bit as well. My marriage is so often put on the back burner because of our son’s needs and my spouse and I don’t have the time to spend with one another because our world is consumed with autism. Date nights are nonexistent, but every few months we try to spend a few hours together alone; however, the work required to schedule all the moving parts is exhausting, and the fallout from the change of routine can last for days. 

Honestly, my marriage would thrive with more respite options, but we simply don’t have the luxury to invest in one another because who will care for our son? While we’re thankful our parents have kept Zeke in the past, it is becoming harder for them as they age, and Zeke is getting bigger. As he ages, our options for respite decrease, and that makes it even more difficult to cultivate our relationship because when he is around, no one is resting. No one is having a quiet conversation and there are no romantic dinners for two. We aren’t able to hire the teenager from down the road because it’s too dangerous and most people are not equipped to care for a child with severe autism.  

If my spouse and I were able to have two hours alone every week and didn’t have to worry about the care Zeke was receiving, we would be unstoppable. My family would flourish!  My spouse is my best friend and a wonderful parent to our little boy, but it would be so nice to have time to be together — alone. Time to invest in our marriage and time to invest in one another. Is that too much to ask? 

About: My name is Jessica. My spouse and I have been married for ten years. We have one little boy, Zeke, who is 6 years old. Zeke was diagnosed with severe nonverbal autism at age two after he regressed and lost all language and social skills. Our home base is North Georgia. However, we are traveling full time in our RV this year. I have my own blog at https://www.facebook.com/Zandme2/. I have also been featured with Finding Coopers Voice, Love what Matters and Her View From Home.

I Never Imagined Marriage Looking Like This

What happens when a husband and wife have very little left for one another?

AG and her family

Second in a series on marriage 

By AG

My husband and I make a good team. Where I am weak, he is strong and where he is weak I am strong. 

We met and fell in love in September 1999 and have been crazy about each other ever since. We wanted children, and I got pregnant 10 months after we were married. We were so excited to begin our journey as parents but then at age two our son was diagnosed with autism. I threw myself into research, new therapies, diets, conferences, and anything I could get my hands on to get my baby back from the dark hole he seemed to have fallen into.  

He also acquired an autoimmune disease at about 7 1/2 years old, and it took us 7 years to get a diagnosis. Our help and treatment was scattered, and we went out of state to find answers. Shortly thereafter, we discovered our second son suffered severe brain damage in the womb. We knew from the beginning that his diagnosis would be lifelong, but we jumped in with both feet. That seems to be what we do. We give all that we have to our boys and then what's left to each other, which isn’t much.  

This way of operating through our marriage is beautiful and bitter — beautiful in that we have truly learned what it means to sacrifice for another person’s wellbeing. To be in love with someone and see your life together passing by so quickly without being able to enjoy what you have with this person you vowed to love, honor and cherish, that’s bitter.  

Or enjoying a rare moment together, which is often rushed and frequently interrupted with questions, phone calls from nurses, therapists, teachers, medical supply companies, doctors, business, or medical crisis. My husband and I long to spend more time together and drift away for a few days, but the care is limited for our boys. There are only a couple of people who are able to help and only for a short amount of time (hours at best), and care for our two boys is expensive. Finally, there's no line of autonomy or privacy when you have two bathrooms and one is used as wheelchair accessible and the other for our 20 yr old autistic son.  

Neither of us is ever functioning at our best. We deal with immune issues from chronic stress, degenerative bone disease, and regular joint pain. We sit outside as much as possible for a quick cup of coffee or sneak away for a couple of hours if the therapist has our oldest and a nurse has our youngest, but it's hard when neither of us has time to process our trauma because we just go from one duty to the next. I've seen evidence of PTSD in both of us. Sometimes when I touch my husband while he's sleeping or try to wake him gently, he jumps out of his skin. We also both deal with depression and wonder when we will be able to do anything either of us dreamed about.  

There are also things we argue about that would not be present without special needs children. A stupid argument might arise when one of us is trying to handle a meltdown and then the other’s anxiety starts to flare. I snap at my husband and feel the need to protect my child even though my child is attacking me. My trauma and fear of losing either of my children has caused me to micromanage at times, which makes my husband feel helpless. He goes inward sometimes and shuts down or gets lost in distraction to numb all that is going on. I don't blame him because it is a lot to handle.  

One child is battling breathing, needs cathing and full medical care and the other is dealing with severe behaviors, epilepsy and needs to be active or he gets agitated. We have two very different levels of ability that we are always juggling. My husband simply turns off those moments when he's processing the loss of our children's abilities whereas I process externally and that weighs on him as well.  

“I am thankful for my family, but I didn’t think it would turn out this way. We long for normalcy. We long deeply for mental, emotional and physical rest. We long for peace, hope and joy.”

I have questioned my faith many times over the years. I've had a lot of "why" questions and doubted the goodness of God. God always brings me back around and restores me. My husband does better in this area and goes with the flow, especially with God. I'm a fighter, a questioner and a doer. We've fought through a lot and grown together a lot. Sometimes, we have nothing left to give to one another because we've given it to everyone else, and we are simply trying to keep our heads above water, but in other ways it has drawn us so close together.

I am thankful for my family, but I didn't think it would turn out this way. We long for normalcy. We long deeply for mental, emotional and physical rest. We long for peace, hope and joy. We are always looking for these but they are hard to find when autism and medical fragility are present. 

About AG: I'm a wife, mother, activist, lover of all things authentic and as transparent as they come. I love Jesus and my faith is as bumpy as my life. I’m also a wife to an amazing man with a big heart, creative abilities and a love for God. We have two children. Our oldest son is almost 21. He has autism, epilepsy and a rare autoimmune condition. Our youngest son has Cerebral Palsy, epilepsy and a spinal cord injury. I have found who I am designed to be when I love my boys. As challenging as it is, it has transformed me into someone I never knew I could be.

Letter to a Forever Dad

In honor of Father’s Day

“‘… in sickness and health, even if our kids are born with special needs or autism and have behavioral issues that we can’t even begin to comprehend, and we need to care for them for the rest of our lives,’
even then — I will love them and I will love you because that is what you’ve done for us.” 

Dear Husband, 

It’s hard to believe it’s been 14 years since we were married. Crazy how a chaotic life can make time pass so quickly.

In those 14 years, we have had our share of joys with new jobs, a new home and the birth of babies. We’ve also had our share of sorrow with the loss of little ones, jobs, and illnesses, but perhaps the greatest challenge we’ve endured has been with our two boys who have autism. 

When I gave birth to our firstborn, you had dreams of him following in your footsteps, participating in Boy Scouts and helping with house projects, but those dreams were replaced with therapy and doctor’s appointments, and you set aside the hurt and loved them even more.

As our boys have aged, now 12 and 11, I’ve seen the strain their extensive needs put on you: the sleepless nights, waking up early, and their inability to regulate at times. 

I see you try to give them all the love you can, even when your own tank is running on empty. I see after a long day at work how you just want to relax, and our boys won’t let you; instead asking question after question, oblivious to the social cues you are giving them that you are desperate for some relaxation. And as you sigh, you give them the attention they long for and answer their questions, again and again, and again. 

I see you show me love even though your tank is empty. I see it in the early mornings when you allow me to sleep in after a rough night and make supper every once in a while — all in spite of another challenging day at work or with our boys.

Two tanks running on fumes for years has undoubtedly resulted in conflict in our marriage. Conflict over how best to help our boys and manage daily behaviors. Conflict over how to find some peace in this chaotic life we live. Conflict because we seem to be more in survival mode most of the time than in a loving relationship. 

I miss you husband. 

I miss our dates, the one opportunity we had for respite from caring for our sons but then the pandemic hit and our caregiver moved away and our dates became few and far between. 

I miss doing things together, as a couple and as a family. More often than not our life is divide-and-conquer, and it’s hard that people have stopped asking where you or I am anymore when we aren’t together. Now, they just know.

Despite all of these challenges, you are a good man, a good father, and a good husband.  

Thank you for loving all of us, even when it wasn’t easy. 

As I contemplate our wedding day and think about our vows, both of us full of ignorant bliss, knowing what I know now I would add, “…in sickness and health, even if our kids are born with special needs or autism and have behavioral issues that we can’t even begin to comprehend, and we need to care for them for the rest of our lives,” even then — I will love them and I will love you because that is what you’ve done for us. 

Happy Anniversary Mr. C, the Forever Daddy

About: My name is Robyn, and I live in Minnesota with my husband Mr C and our six kids. Our oldest two boys both are on the Autism Spectrum. My hobbies include blogging, staying up late and drinking coffee. 

Autism advocacy is my passion.

Blog link: https://m.facebook.com/StixAndFuzzies/

"I have yet to see meaningful answers that help our family": A mother speaks out on severe autism

By Alicia Mesa

The author and her autistic son, Pablo.

My son Pablo, we call him Pablito, has a mischievous smile and a great love for music (he's partial to country music and Spanish pop). He also has an autism of the most serious kind.

At 17 years old, he remains nonverbal and locked in a cycle of self injury so severe he needs to wear limiters on his arms to prevent him from hitting himself with too much force, and a helmet to prevent brain injury from hitting his head on hard surfaces (he goes for the hardwood table, granite counter tops, door-frames, or any hard surface he can find).

He requires intensive round-the-clock care, usually involving two or more caregivers at a time. Things like getting him to eat, showering him and brushing his teeth are extremely difficult. It takes me a good 30 to 40 minutes just to work up the courage to shower him, as he engages in self-harm and aggression for the duration of the shower. Getting him to eat a meal often takes over an hour. We also recently found out he has GI issues, which may be causing pain and exacerbating these behaviors, and we hope we can at least address those. We have not found any intervention that has provided meaningful improvement in his dire condition. Last year, TEN different ABA agencies refused to provide intervention services to my son due to the level of specialized care he requires. 

“Unless you live with someone like Pablito, you cannot understand the suffering of that individual, or the crushing responsibilities imposed on family members.”

Unless you live with someone like Pablito, you cannot understand the suffering of that individual, or the crushing responsibilities imposed on family members. The entire family suffers. A simple errand like running to the grocery store to pick up a carton of milk requires a Navy-Seal-like level of planning. To be honest, when I don't have help at home I sometimes wonder if I can survive another day.

I'm also left with a million questions. I want to know what went wrong with his brain development. I want to find treatments that can ease his horrific suffering. I want to know where he can live when we can no longer care for him. I want to know if his two typical siblings have increased risk for bearing children with autism. After years of asking these questions, I have yet to see meaningful answers that help our family.

When I heard about the formation of the National Council on Severe Autism I felt a flicker of hope. Finally, an organization that takes seriously the devastating toll caused by severe autism. Our autism is not the quirky college professor or accountant, or other people who can function day to day. What my beloved Pablito suffers has absolutely nothing in common with what others call "autistic." And it's horrifying to see the word autism trivialized like this condition is some sort of choice or natural variation, when obviously in cases like ours it's a disability of the most extreme nature imaginable. 

“We are too busy, too broke, and too tired to even raise our hands and engage in the conversation. But I will support the NCSA and its efforts to shine a light on the world of severe autism.”

I can’t drive to Sacramento or fly to DC to advocate for my son's needs and shine a light on our plight. We are too busy, too broke, and too tired to even raise our hands and engage in the conversation. But I will support the NCSA and its efforts to shine a light on the world of severe autism, and help bring fresh answers for our families. I cannot sugar-coat this: families like mine are desperate. Romanticizing autism has got to stop. I love that NCSA will never trivialize our reality, or invalidate our pain.

Alicia Mesa is the mother of three children, one with a severe form of autism. She and her family live in Freedom, California.