I had no idea that January 22, 2013, was the day that our life’s course would be forever changed. That our outlook and perspectives on life would shift and who we were as people, parents and a family would never be the same. All of our expectations about family and children would be challenged and shaken to the core. That day our son was diagnosed with autism. Any naïveté I had left vanished as my eyes and ears were forced open to see and hear the truth about our first born son. I no longer could continue to live my life blissfully unaware.
We were sitting in the doctor’s office watching him go through a series of silly play tasks with Owen. I watched Owen’s every move, looking for signs of autism. I was fairly certain that he performed typically. After 20 minutes or so the doctor turned to my husband and I and said, “Let me tell you a little more about myself and my practice.” My mind started to spin. “Why wasn’t he reassuring us that Owen was fine?” “We didn’t need to know anything about him because we weren’t coming back.”
I asked him quietly, “Is he autistic?” I had heard him say that Owen was on the spectrum but I didn’t know what that meant. He smiled and said gently, “Yes, he has autism.” I felt like I had been hit in the stomach. I began to cry. He patted me on the knee and reassured me that it wouldn’t always feel as bleak as it does now. He gave us a list of agencies to call and things to do until our next appointment. My husband and I thanked this odd and quirky man for changing our lives as we know it and left his office with Owen in tow.
During the long ride home, my husband was oddly chipper. He kept telling me that the diagnosis wouldn’t change anything. I’m not sure who he was trying to convince more, me or himself. I was in shock. My mind was racing, incapable of holding a thought for more than a few seconds. I knew nothing of autism. I had specifically avoided reading anything about it because I knew that Owen wouldn’t be diagnosed. I knew nothing and felt paralyzed with fear.
The year following Owen’s diagnosis was the hardest year of my life to date. Nothing could have prepared Jeff and I for the utter chaos, turmoil, depression, anger, resentment and grief that would envelope us in the months to come. Once we got home and put the boys to bed, I immediately got on the computer and began researching. I read every article, blog post and research data about autism. The more I read the more terrified I became. I read article after article about regression. I thought that meant that Owen would begin to regress at any time. That he would lose his speech. I didn’t know and that was terrifying. Frantically, I got to work making phone calls, lining up Early Intervention, applying for medical assistance and making an appointment with a therapist for Jeff and I to begin couples grief counseling to talk about grieving an autism diagnosis. I didn’t know what any of this meant but the doctor suggested I do these things and being able to check things off of a list made it feel like I was doing something.
At home, things weren’t getting any better. Our once happy, easy going two year old little boy was becoming depressed. That February, I was going through my recent pictures of the kids when I noticed that Owen looked full of anxiety and sad in almost every picture. What’s happening to my little boy? I thought as I cried.
One week later, a coordinator from Early Intervention (EI) came to our house to discuss our options. At this point, I had read countless articles on autism and was more capable of speaking the acronym language or at least understanding it. After evaluating Owen and talking to us for a couple of hours it was decided that Owen would be eligible for five in-home therapy sessions per week. They set us up with a speech therapist, once a week, occupational therapist, twice a week, and Special Instruction (EI’s version of a behaviorist) twice a week. I felt a huge sense of relief. I assumed that the therapists would be able to treat Owen’s fear of his little brothers cry so we could start living like a family. I felt hope for the first time since his diagnosis.
I was very fortunate to have so much help from my mom, mother-in-law and aunt during this time. They took turns watching Eli in the mornings so that I could focus on Owen and his therapy. I had no idea what to expect as I met each therapist and watched them work with Owen. At the time, I really expected them to be miracle workers. I thought they would come in, look at Owen and be able to treat him just as a nurse or doctor would treat a sick patient. I soon learned that that was not the case. In retrospect, they did treat a number of things and were an incredible help to my family but in different ways than I had expected. First, they insisted on teaching me how to teach Owen. They showed me how to teach him fine motor skills through play and how to calm him when he got discouraged or frustrated. They taught me how to be clear, consistent and firm in my expectations of him. I can’t say enough good things about Early Intervention. They came into our home at one of the hardest times in our lives and taught me how to care for Owen and our family. I’m not sure who they helped more, Owen or me.
During that time, I sought treatment for my anxiety and depression and began taking an antidepressant. Within a few days there was a shift in my mental well being. It was like getting glasses for the first time. Everything became clearer and brighter. Every day tasks no longer felt like an uphill battle. Situations that normally would have caused me a large amount of anxiety were a temporary nuisance instead of a monumental task. Early Intervention stayed with us for an entire year before Owen transitioned into the Intermediary Unit at three years old.
Throughout the year following Owen’s diagnosis, life at home continued to spiral downward. It wasn’t all terrible, we had good moments but most of it was difficult and painful. Jeff and I were growing further and further apart. We hadn’t given ourselves enough time before having children to develop a strong foundation in our relationship. This difficult time was putting our marriage to the test and we were close to breaking.
We began blaming each other, quietly to ourselves first then later in loud fights and accusations. Jeff thought I was babying Owen too much that if I was harder on him he’d be able to do more things for himself. He accused me of making excuses for Owen because of his autism. I was eating, breathing and sleeping autism. Every moment I wasn’t taking care of the kids I was on the internet researching autism. I learned about the challenges of autism. That just because Owen could talk and label items it was not the same as communicating and understanding what we were asking him to do. Whenever I would try to talk to Jeff about the things I had read on autism he would get angry and accuse me of making excuses.
I began to pick Jeff apart. I began blaming him for Owen’s having autism. Everything that irked me about Jeff before Owen’s diagnosis was suddenly magnified. I couldn’t see the good, all I saw was the bad. I know now that I was grieving. I was grieving the life and family that I thought we were going to have while trying to navigate my way through the murky waters of autism and I was angry. I couldn’t be angry at Owen, it wasn’t his fault he had autism and I couldn’t be angry at our newborn son because it wasn’t his fault that his cries were what set Owen off so I directed all of my anger and frustration at Jeff and it wasn’t fair. See Autism and Grieving.
Jeff began working later and later. Every minute past the time he should be home felt like an hour. I would see his car pull into the driveway and I would pray for understanding, patience and love for him. As he walked in the house I would see the miserable look on his face and I could tell that he was trying to read my mood to determine how the night was going to go and I immediately felt angry. He’d ask me how my day went and I would begin to go through it in detail, reliving every horrible thing until I was angry and resentful. He would tune out halfway through my litany of woes and I would get mad and yell at him for not listening or shut myself in the bathroom and cry. He would take Owen or Eli upstairs while I’d keep the other downstairs with me until dinner was ready.
We couldn’t talk about anything at length because we were constantly trying to keep Eli from crying or Owen from melting down. The atmosphere in our house was toxic. Even the dogs had anxiety. To this day, when Eli or Owen begin to cry, our dogs run upstairs and hide. I’ll find them on or under our bed trembling. All the fear and anxiety that enveloped us was taking its toll.
Jeff and I began a cycle that was really difficult to break. We would have a huge, explosive fight, usually at night when we were both sleep deprived and then we would spend hours talking until it was somewhat resolved. We would gain perspective on our feelings becoming closer and more connected. Of course, once there was time alone, the hurtful things said during our fights would creep back in and override the good things we had talked about. We would agree to communicate more but life would happen. Things were so intense, never letting up, that we would soon stop communicating. A couple of weeks would go by then I would start with the passive aggressive comments and he would begin doing or not doing things that he knew irritated me. Everything looked okay on the surface because we weren’t fighting out loud but it was smoldering underneath and we both knew that we were about to erupt. Then something would happen or nothing would happen and one of us would snap and the big fight would start again, thus the vicious cycle.
We just kept trudging forward. Putting one foot in front of the other. If it hadn’t been so intense, I’m not sure our marriage would have survived. We were both trying so hard to keep our heads above water each day that we were too exhausted to do anything else.
We did do some things right during that time. We continued to have regular date nights at least every other week. Several date nights ended up with us fighting and miserable but there were also some nights where we would laugh and talk about things other than autism. During those times, I would remember the guy I fell in love with and I would feel hopeful that we would get through this together. We continued to go to counseling. I liked that it provided us a safe place to examine where each of us were and to discuss things that angered us without getting into a huge fight. However, I didn’t connect with the therapist. I wanted desperately to talk to someone who had experience living with autism and she did not. I felt like she couldn’t possibly understand what it was like and had a hard time trusting her input. However, I had my best friend and sponsor who I talked with frequently about my feelings as well as my mother and mother-in-law. I was also a member of several Facebook Groups where I connected with other Mom’s who had children on the spectrum.
Jeff didn’t have an outlet. He wasn’t talking to me or any friends. He had a sponsor that he would talk to periodically when things got overwhelming but he desperately needed someone to talk to more frequently and the therapist provided that for him. I stopped going and he continued to see her on a biweekly basis. Three years later and he still goes monthly. She has been a huge support for him and I will be forever grateful to her. Trust me, in the beginning it bugged the hell out of me that he continued to go. I knew that he would go there and complain about me and it was really difficult letting go and trusting that this was what he needed to do without constantly trying to defend myself. He wouldn’t tell me when his therapy appointments were. By keeping his meetings a secret they became all that more threatening to me. However, over time and as our relationship began to heal he began opening up and talking to me about therapy and some of the things they talked about. Suddenly, the fears and insecurities I had about him going began to fade. I saw that he gained perspective and insight after going there and he always came home calmer.
Throughout that year we fell into a routine at home. One of the kids would spend the morning at their grandma’s so Owen could relax. The afternoons were usually nightmarish. I spent many afternoons locked in our bathroom crying and praying for strength while Owen was in the living room melting down and Eli in his crib crying. A couple of times, I’d call my Mom from in the bathroom and ask for help. She would come at a moment’s notice and take one of the boys home with her. I don’t know where our family would be if it wasn’t for the steadfast support of my parents and in-laws.
We still drove everywhere separately, only driving the boys together if we absolutely had too. Owen was beginning to show progress in therapy and I was gaining confidence in how to gauge his moods and behaviors. We were facing our fears of going out in public together. Eli was getting bigger and crying less. Owen would completely ignore Eli when he wasn’t crying and considering the alternative, I was okay with that. Slowly and surely, I began to accept Owen’s diagnosis and our family as it was. I began finding humor in some of the quirky things Owen did and I was able to begin enjoying Eli, watching him grow and learn new things.
As I grew stronger and began feeling better, Jeff began spiraling downward. He told me that they discussed this at length in therapy. He had to stay strong for our family during the year while I was unraveling. Once I began to heal he suddenly became full of anger and resentment. It was his turn to grieve. He would pick at me constantly. Telling me what I needed to do to take care of myself, get a hobby, make friends, get out of the house, etc. Although all good suggestions, I had my hands full taking care of myself and our family. At the time, I felt like I wasn’t measuring up and should be doing more. I realize now that he was picking me apart just as I had done to him because that was easier than facing our own grief and pain.
Jeff’s grieving looked differently than mine but it was very real and necessary for him to go through. He would quietly simmer for weeks, looking miserable then out of nowhere he would begin to open up and tell me just a few of his fears and concerns about Owen and our family. It was during those times that I fell in love with him again. I saw him struggling and hurting and I wanted so much to make it better for him.
We just kept putting one foot in front of the other. Little by little we found our niche as a family. We made sure we each got two nights off a week. Jeff’s were Tuesday evenings and Sunday mornings and mine were Wednesday evenings and Saturday mornings. We’d get creative with date nights. I found a great site on Pinterest that gave lists of things to talk about on date night so that we didn’t fall into the date night trap of talking about the kids, autism or work. We started having fun again. Owen and Eli could sense the calmness between us and they began to relax. The dogs began to play again. As a family we were healing.