#KickedOut: Too Autistic for Local Programs, but Finding Help, at a Distance

“He needed me for every aspect of his well-being and most importantly, he just needed me to be there.”

Third in a series of commentaries about the disparate treatment of individuals and families affected by severe autism

By Laura

My firstborn went off to college after I had done all I could do to pave the way for her independence and set her up for success. It was the next step. It was normal. It was typical. It was a part of growing up. 

When my son T, who has severe autism, was the same age, I couldn’t imagine sending him off to live somewhere else. I felt he needed my care, he depended on my care, and no one else could possibly care for him the way I did. He needed me to shower him, wash his hair, shave his face, clean his bottom, to ensure he used deodorant and brushed his teeth. He needed me to clean his ears, trim his toenails, and help him dress. He needed me for every aspect of his well-being and most importantly, he just needed me to be there. 

When T turned 21, his Dad and I decided we would look at what type of assisted living opportunities might become available at some point in time. We still weren’t ready but we were curious. We toured a couple of homes in the county, but even if we would have been ready, there was no availability. I decided that I wanted to be able to help him have a successful transition to living away from home and make it as easy as possible for him. I did not want there to be an emergency placement (as is so often what happens) and have him put somewhere with no preparation on his end or for the staff in the home. 

We found out about an amazing development being created in our county with opportunities for a dozen individuals. There was a church, a barn, and homes with an amazing layout. Each individual had their own bedroom, living area and bathroom. I cried when I walked in and saw the space. The residents also shared a large gathering space, dining room and kitchen. 

We worked hard to show that T had made progress with the behavioral issues that the development had an issue with prior. He was more patient and tolerant of others and with support from our case manager, T was given one of the last four spots that were available. We were overjoyed and began our preparation. 

It was a 6-month process from learning that T would attend this amazing place to his actual placement. Social stories were written to help prepare him. We made new symbols for his schedule book, we added pictures of staff to the book, we created countdown calendars and marked the days until T’s new house became a reality! 

When the time arrived, we went to set up his place, we made sure that ALL of his stuff was there because this “stuff” (including 100’s of VHS tapes) mattered. He would know if things were missing and we wanted him to feel 100% at home. 

The philosophy of this particular organization was to not allow parents to visit for several weeks. This made the goodbyes on that moving day even more difficult. After all, in 26 years, T and I had never been apart for more than a week. 

We had supplied the staff with a book about T’s behaviors. When he says this, it means this, calming techniques for when he becomes anxious, what makes him happy, when to give him space etc. It can be like learning a new language in a way, but once you figure him out, and use his schedule book, the system usually runs very smoothly.

Weeks went by and another roommate was added to T’s house. This young man was very verbal and persistent. One night T was upset and missing his family. He was lying on the ground asking for us. No one implemented the plan that we had outlined when T’s anxiety began to rise. T pushed his new roommate down, hit him and then hit a staff member as they tried to intervene. We were called and rushed over. By the time we arrived it was 10 p.m. and he was on the floor crying. We were told he had to leave the next day. 

We knew and understood that his behavior was wrong, but we also believe that had we been able to visit and spend time with the staff and show them how to best interact with T, it could have had a more positive outcome. Now everything we worked for was gone.

T’s school years were ending in just weeks and that meant T would be at home full time. He had nowhere to go and no one to care for him while I worked. No day programs available, at all. We were about to fall off the cliff - together. 

I knew I had to work fast to try and make arrangements, and that was a full-time job in itself. I also knew that any future placement for him was very unlikely after his incident. 

A year passed, and we assembled a new normal without school, found some caregiving support, and had a meeting with Community Mental Health. We said we were willing to look outside of our county to see what options might be available. An option was presented 161 miles away from our home. We felt we had to look, or we might never be presented with future opportunities. 

T’s dad and I drove there believing we would leave and say it was just too far from home and it wouldn’t work for him. Instead, we both somehow felt this was an environment he might do well in. It was a grade school converted into a group home for 24 residents. He would have his own large room and half bath. It was large enough to hold his belongings and still give him some space. It was new and fresh and we felt like it might work.

We drove home thinking about the long drive but knew T’s well being was what ultimately mattered. We chose to move forward. This may not be his forever home as I am also trying to figure out a better solution, but it works for now and that has to be enough. 

Laura was born and raised in Wisconsin but has lived the last 30 years in West Michigan. She is a mother to A and T and wife to Bill. She graduated from the University of Wisconsin Madison and has a successful 35-year sales career selling wine and liquor, pharmaceuticals and currently real estate. She is an advocate for all things T and autism related, fan of her daughter’s photography career and also enjoys quilting and gardening. 

Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors. Inclusion of any product or service in a blogpost is not an advertisement, is not made for any compensation, and does not represent an official endorsement.

#KickedOut: When Severe Autism Makes You Too Disabled for Disability Programs

Her son was asked to leave nearly every disability activity he tried

(First in a series of commentaries about the disparate treatment of individuals and families affected by severe autism)

By Deborah Lane

I am a mom to a 31-year-old son B who has autism and intellectual disabilities. He has my entire heart and keeps me entertained with his ridiculous sense of humor and repetition of movie lines used for every situation. He has a childlike faith that teaches me every day, especially when he says his blessing over dinner “thank you Jesus for a very bad day and please help me wait for the live-action Little Mermaid.” Or when he doesn’t leave the house without me putting my hand on his head and saying “Jesus over you today”. In all of these joyful moments, he is also my biggest challenge as his behaviors can escalate in an instant and cause injury and destruction.

When he was around 8 years old, we participated in Special Olympics. During our first several years we chose swimming because he was a water bug and loved it; however, soon after, a new instructor was hired and said that my son was not a good fit for Special Olympics any longer as he was not able to “cooperate appropriately”. We continued to participate in open swim time at the high school most weekends, but I no longer loved Special Olympics or believed in their program. 

Several years later, we were encouraged to try the Special Olympics bowling. I was hesitant but at the same time wanted him to be part of some kind of community. We were not able to even finish the first round because he displayed significant behavioral issues. It was noisy, and the environment was too much for him which resulted in rage and him needing to be restrained by one of the other parents. We were not allowed to attend again.  

A few years after this traumatic incident, we took him to a sleepover camp for special needs children. He did well for a couple of years which made us confident in leaving town to enjoy a vacation. On the first night away from home, we received a call from the camp. Our son had attacked his roommate, and we had to pick him up immediately. The funny thing (not actually funny at all), we paid extra for one-to-one support to safeguard against something like this happening.

When he aged out of school at 21, we entered the world of day programs. We chose to leave the first one because the staff was horrifying in their treatment of the individuals. The second option could have worked if they had given him a one-to-one like we repeatedly begged for but never received. Long story short, the director eventually asked us to leave because his behaviors were too intense. I was devastated and not sure how we were going to proceed.  

After a lot of research, contemplation, and prayer, I decided to start my own day program for him. Honestly, It’s a 24/7 bureaucratic nightmare, especially with the lack of staff and funding, and I never know what tomorrow will bring, but at least I know he won’t be kicked out of this one. At least I know I’m doing my best to provide purpose and community for my son and others like him. At least I know I did everything in my power to help my son feel like he belongs.  

Deborah Lane is a mom who lives in Glastonbury, Connecticut. B is the youngest of her five children. Everyone else is grown and flown and busy giving her grandbabies. Needless to say, they bring her joy without measure. She hasn’t been able to work for many years now as B’s needs became too intense. She loves movement of any kind and needs it! She calls out the name of Jesus all day and night as her source to get through every moment.

Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors. Inclusion of any product or service in a blogpost is not an advertisement, is not made for any compensation, and does not represent an official endorsement.

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/