***Guest Post written by Monica Stephens***
To even type one sentence now seems so foreign. It’s been that long since I felt any desire to share this story with anyone. While listening to an audio book this week, I heard a phrase, one of those phrases where it pushes into you, and you’re left not quite the same afterwards. It says, “The presence of God abides on the arc of the testimony.” The writer goes on to explain this as meaning, when you tell others your story of the way God has come through in your life, His presence shows up and the impossible becomes possible. This isn’t the first time I’ve felt that gentle nudge or invitation from God to put my experience into words on a screen, but this is the first time I felt ready. So, with little resistance from my end, I sat down and said a prayer “Ok Lord, let’s do this. I’m in.”
A pregnant brain has the ability to jump lightyears ahead, create magical worlds for her unborn child, and dream the sweetest of dreams of all the joys she will witness in their lifespan. When I learned my second child would be a boy, that little painter in my mind kicked into overdrive, and soon presented me with beautiful masterpieces showcasing the highlights of his life to come. His little league baseball team, this is where he would form some of his life-long friend ships. These were the boys that would be standing next to him on his wedding day (we’ll get to that in a minute). After winning the game, this sweaty dusty group would head over to the back of my car. I’d pop the hatch where a cooler filled with drinks and young boys’ favorite snacks would be waiting. On the way home, I’d turn the radio down so that I could take in all the excitement and chatter of the after game high. Flash forward. My boy would be tall, taller than me. I’d look up to him and he would be the kind of man who would look out for his Mama. When he would come by for his weekly check-ins, that he never missed, he would make sure the grass had been mowed, he would fix little things around the house, and we would talk, real talks, about life, marriage, God, and kids. He would never leave the house without leaning down and giving his aging mother a kiss on her forehead. Time Hop. Let me tell you about my daughter-in-law. She is the kind of woman who completes our family. She’s like the sister my daughter never had, she’s going to be a remarkable wife, and I’ve truly never seen such joy across my boy’s face as she makes her way down the aisle and into our hearts. Ok, you get it. I had great aspirations and dreams for this little one that I was just beginning to feel the first real kicks out of. We had a long way to go.
We had a long way to go.
Back to stunning reality now. January 30, 2019, otherwise known as diagnoses day. We heard the words, “Yes, Wyatt is autistic.” roll off our Developmental Pediatrician’s tongue so matter of fact. Like she was ordering lunch, “Yes, I’ll have the grilled chicken.” However, they landed on our ears as anything but. In the weeks to follow came the marathon of evaluations and tests. Phrases like, difficult to engage, poor muscle tone, consider delaying kindergarten, and one that I’ll never forget, Wyatt performed worse than 99% of children his age began to fill pages on my desk. More diagnoses followed; sensory processing disorder, receptive-expressive language delay, developmental delay. This marked the beginning of my season of grief.
At the time, my husband and I had separated, and this is not to say he wasn’t supportive of Wyatt because he 100% was. This is to give context to my season. I was overwhelmed. My daughter was in Kindergarten and I had this seeming healthy, happy, quirky little 3-year-old. Yet, all professionals where constantly telling me everything that was wrong with him and everything he could not do. I can admit there was a denial phase initially. But as the months went by and Wyatt still didn’t talk, he still wouldn’t potty train, certain situations consistently overwhelmed him (insert Happy Birthday Song at parties), denial was no longer on the table and acceptance came with a whole new sub category of emotions. Anxiety, depression, fear, shame, uncertainty, and a sense of no real control settled in. Had I done something to cause this? Did I neglect to do something that could have prevented it?
Those beautiful movie reels and pictures I had stored away in my mind suddenly came forward, only now they were burning away, pages ripped, paint dripping and smeared. Wyatt may never be able to play sports. What if he can’t connect with his peers and make friends? Or worse, what if they make fun of him, bully him even? He might never be able to drive a car or be independent. Will I still be taking care of him as an adult when I’m aging? That is not the way I had pictured it. Where has my daughter-in-law gone? Where before I could see her so clearly, now she seems to have vanished.
Now hear me out, I am a rational, faith-filled woman, and I know that none of these things are truths, and none of my dreams or expectations were ever truths either. They were simply hopes, daydreams, and inspirations of moments to look forward to. I also know that God writes my story the same as He writes Wyatt’s, and I remember His presence makes the impossible possible. But that’s what I want you to understand about grief. It never consults the left side of the brain to see if its presence is warranted. Grief doesn’t make a list of the pros and cons and weigh the options to see if it’s worth spending your energy on. Grief just barges in unwelcomed and fills the air so thick that at times you are left wondering where you will draw that next breath from. Sounds dramatic right? But that’s grief; ugly crying, withdrawing, feeling hopeless, losing joy. Dictionary.com defines grief as “keen mental suffering or distress over affliction or loss.” I would agree that accurately described where I found myself.
After diagnosis day, I was left with the daunting task of deciding when and how to divulge this new found identity to family, friends, even strangers, who unknowingly try to ask your non-verbal child questions (the infamous “Hey Buddy! How old are you?” – only to be met with a blank stare.) When do I make it Facebook official?? These are very personal decisions and won’t be the same for everyone. For me, because I was drowning in grief, I didn’t want to tell anyone. I didn’t want to go anywhere. I just wanted to stay at home in our safe little bubble. There was the one extended family member who said “Don’t worry, he’ll grow out of it.” Then the other, whose every interaction there after began with “What you need to do is…” Because they had met one autistic person, they felt this qualified them as an expert worthy of giving advice. And the statement that stung the most usually came from church members, “God made him that way.” I’m not sure I can get behind that one. Yes, God allowed Wyatt’s brain development to be non-typical, but I don’t believe he created him to be that way. His autism is a consequence of the fallen world that we all live in. I remember holding Wyatt in the back of a church service one Sunday while the worship team played and one of the song lyrics said “… ALL the earth will shout his praise…” In that instant, I felt God whisper into my soul, “You know that means Wyatt too!” It was then that I knew, whether on this side of heaven or the other, one day, Wyatt will no longer be hindered by this disability that inhibits his communication.
Up to a point, Wyatt’s diagnosis could be concealed to the general population. After all, no one really expects that much from a 3-year-old. Somewhere closer to 4 was the time that Wyatt’s differences truly became visible to the outsider. He was clearly big enough to be talking, big enough to not need a pull up, and his sensory overstimulation was impossible to miss. I began to notice people watching him, wondering, and they always proceeded with the same question, “How old is he?” This was followed by polite smiles, when I answered my blanket toting, sippy cup drinking, lost in his own world little boy was four. Can we just get home please without me feeling the need to explain that my son has autism? At this point, I could hardly even say the words without crying.
These first years we also went through a whirlwind string of therapists and teachers. It began at an evaluation where an energetic therapist made grandiose plans of how she was going to help Wyatt and the year was going to be amazing! For the first time since diagnoses day, I started to get excited. I started to think I could put my trust in this person, like we had found our people, like we would belong somewhere. That would soon change. When my husband took Wyatt for his first session a week later, we discovered, with no real explanation, that he had been switched to a new therapist who was less enthusiastic than the first. Following that, the director of our pre-school expressed that she didn’t feel comfortable with Wyatt entering the upcoming 4-year-old program at the school. We set him up in a new school with an amazing teacher, who then moved out of state two weeks before classes started. Another promising therapist’s case load became too full so he was shifted once again to the next therapist. Within the first two weeks at his new school, he was moved from one classroom to another. All this shifting ground left me with an uneasy feeling and wanting nothing more than to crawl back into my secluded hole at home. It all felt like more loss, more grief.
I want to give credit to my tribe here. I am fortunate to have an amazing set of parents and the absolute greatest sister ever created. Seriously, when God forms sisters, I envision those friendship necklaces that pull apart, but when placed side by side fit perfectly together, the yin and yang. That’s us. My children and I have also lovingly been adopted into my sister’s husband’s family. We are surrounded by a great support system, but besides this close circle of my trusted tribe, I shut the world out.
These days my world is much different. I’m happy to say our family is back together and I partially credit Wyatt for this. My husband and I decided that when you share the task of raising two very amazing children, it’s something worth humbling yourself for and putting your differences aside to rebuild your family. I no longer feel like I lost a life that I could have had with a neuro-typical child. Instead I feel privileged that I’m one of the lucky few that gets to be an insider, and have a front row seat into Wyatt’s world. I look at the revolving door of support staff as a learning experience. It’s made me so much more appreciative when we do land on a good team. I’ve learned to extend grace to the people who may not have known what to say or how to act around us. I’ve realized that people’s schedules do change and nothing is certain in school systems but none of this is a personal attack on me or my child. There will always be shifting sand and circumstances out of my control. My job as an Autism Warrior is to simply be his advocate and do the very best that I can with the things that are in my control and to let that be enough.
This is where I am today, but this is not where I started. I walked through the shadowy valley of grief to get here. You must understand that it’s not that our circumstances have changed. It’s my perspective. While there are a great number of miraculous things that Wyatt can do, like spell Nickelodeon and octopus at 5 years old, or memorize and sing countless songs on key during our lazy evening dog walks, he still can’t have a conversation or use words to express wants and needs. He still wears pull-ups and sleeps in my bed every night. Wyatt needs multiple support staff to get through his days at school and we are blessed to have a wonderful team in place this year. But I no longer look to these people or evaluation reports to give me hope.
My hope has been found and grounded in Jesus. When my world fell apart around me, I fell into a savior’s arms. When I cried myself to sleep, I could feel a sense of peace in the room, I knew that I was held and that He cried with me. When I asked questions and pleaded for answers, I always soon after found myself listening to a song or a sermon that would speak hope directly into my situation. I’m fortunate enough to be close friends with my health care provider. During that time of grief, she was able to find a medication for me, which helped stabilize my fluctuating emotions. I still take this medication today, and that is OK! We serve a God who is not limited in how He meets our needs. He can choose to heal through friendships, opening or closing doors, one miraculous word, or even medical intervention such as a medication. During the time of separation from my husband, God provided a roof over our heads and safe space to just be. A place to call home and just be who we were, to just go through what we were going through unapologetically. A place to hide away, and He stayed there with us always. I would hear Him in my daughter’s prayers. I would feel His presence when my own heart would soften to gentleness and my patience would grow a little bigger. I realized that even in this dark season of loss and sadness, He was growing fruit in my spirit. “You meant evil against me, but God meant it for good” – Genesis 50:20. My roots grew so strong in that time. I am forever changed by the foundation that I stand on today because of it all. It’s worth mentioning here just how important it is to not let bitterness have a voice in your story. In the book of Matthew, he recounts Jesus’ crucifixion and says, “The soldiers gave Jesus wine mixed with bitter gall, but when he had tasted it, he refused to drink it.” -Matthew 27:34. Even during this dark, most painful hour, Jesus refused to take bitterness into his heart. Even when he was wrongly accused and suffering in mental and physical agony, he would not drink from the cup of bitterness. I drew inspiration from this text and made a conscious decision that I would not allow bitterness to grow. I would overcome this.
I would overcome this.
I want to tell you that your own seasons of grief and loss will not go on forever. I wish that I had not felt so isolated and ashamed during those days. I hope that sharing this story will normalize grief. It is my heart that others will not feel as though they need to hide away to go through the process. Your loss may look different from mine. It could come in the form of a failed marriage, a broken friendship, the loss of your health, the death of a family member, a church split, or even a lost job. Whatever mental suffering you endure, it is possible with God to emerge on the other side with a newfound perspective.
