Trusting My Instincts

July 19, 2017 ABA therapy, Attachment, attachment activities, attachment challenges, autism, cocooning, developmental delays, Developmental System, early intervention, Education, Family Stories, IEP, indiscriminate affection, occupational therapy, speech delay, speech therapy 1 Comments

My husband Derrick and I had been married for almost eight years when, in the summer of 2015, our path to parenthood ultimately led us to adopt from the China Special Needs program. Up to that point, we had never considered what life would be like for our growing family outside of the “typical” narrative. We knew that our journey would rewrite the definition of normal for us… we just didn’t know how much.

Almost seven months to the day we submitted our application, I was sitting at my desk at work when my agency’s number appeared on my cell phone. My hands shook as I tried to write down everything the agency rep said about the “lovely and handsome” 18 month old boy from Xinxiang. His file indicated he was born prematurely and had developmental delays.

When considering the medical conditions early on in the process, we tried to anticipate what we thought we had the resources to handle while knowing that nothing in life is certain. Through extensive research we were able to determine that, while developmental delays come with so many unknowns, we were in a position to accommodate this particular need.

We only had three days to make our decision, so we needed to find a doctor to review the file as soon as possible. I had already been collecting names of international adoption specialists, but I hadn’t anticipated needing one so soon. Being part of the online adoption community, I knew one doctor who was known for having a fast turn-around-time, so I sent her the file.

I don’t even think an hour had passed before the phone rang and her number showed up on the caller ID. I felt my chest tighten up when she skipped the niceties and got right to it: “So, can we talk about this baby?”

I listened intently while the doctor listed all the seemingly catastrophic outcomes that could come as a result of his circumstances. I can still hear her voice in my head saying over and over: “It’s never good to be 1.4 kilos.” She had major concerns about his head circumference, his weight, and his unknown prenatal history. She left me with a list of warnings about possible neurological disorders and cognitive issues, and I thanked the good doctor for telling me what I needed to hear. This particular doctor had a reputation for giving the worst case scenario. Being a realist, I knew myself well enough to know that the worst case scenario was exactly what I needed. I knew I needed to approach this with a level head, but my stomach was in knots.

When I recounted the conversation with my husband, I was almost certain he was going to be deterred by all of the possible red flags. Thankfully, I was wrong.

The following morning, we received an update with a more recent photo. At that point, the decision had already been made and within a few minutes I was emailing the agency to lock his file.

We had found our son.

Prior to match, I had spent hours researching anything and everything related to adoption and attachment. I read The Connected Child and The Weaver’s Craft every night on my iPad and kept a copy of Parenting Your Internationally Adopted Child next to me on my nightstand.

Once I knew we would be welcoming a little boy with speech and motor delays, I dove into that realm with the same level of determination bordering on obsession. I spent my free time punching numbers into online growth charts and reading about developmental delays in premature and low birth weight babies. I had already joined every Facebook group I could find that had to do with China Adoption and Special Needs.

Every now and then, I would still hear that doctor’s voice in my head: “It’s never good to be 1.4 kilos.” I was scared, but more driven than ever to prepare to help our little one with whatever challenges he would have to face. I remember fighting back tears in Target when the reality hit me that my almost two year old was probably wearing 6-9 month clothing.

The week before we were set to travel, I filled out the online referral form with Missouri First Steps (our state Early Intervention program) to set up an evaluation upon our return. I have heard of families waiting until their children were home for a while to help facilitate attachment, but I was leaving nothing to chance. I set up doctor appointments and prepared our home for an unspecified period of cocooning. We did the best we could to ready ourselves for our new arrival with what little information we had.

Less than three months after that phone call, we walked into the Civil Affairs office in Zhengzhou and I saw a tiny little boy sitting in a chair across the room. Once I realized it was him I was practically climbing the walls as I anxiously waited for someone to call his name. After about thirty seconds that felt like an eternity, the orphanage officer placed him in my arms. He seemed okay with us holding him, but it was obvious he was in shock. At 20 months, he was so small that he was swimming in the clothes we had brought him.

During those next two weeks, we were able to better assess where he was developmentally. He was crawling and learning to stand unsupported. After a week of refusing anything other than formula and rice cereal from a bottle, he finally accepted solid foods. He did not know how to chew, but at that point we were just happy to see him eating. He did not know the first thing about how to play with toys. We knew we had work to do, and I made a promise to our little guy that day: we would never stop fighting for him.

Our first few months as a family were turbulent times. My husband was starting a new job, and I was a new stay-at-home mom. Our son struggled to attach to us. I floundered through each attempt to apply all of the attachment techniques that I had gathered over the months of waiting, only to find that our son seemed to be the exception to every rule.

He actively avoided eye contact and pushed us away when we tried to comfort him. He did not want to be held by either of us, yet he happily cuddled up to any new stranger that came along. We were helpless when he woke up screaming with night terrors. Any and all parenting advice thrown at us was completely irrelevant and thus ignored.

Meanwhile, every insecurity and past trauma that I had buried deep in my soul found its way to the surface. I wandered through each day in a haze before recognizing that I was in desperate need of self-care in order to be the version of myself that my son needed me to be.

We continued to live one day at a time in survival mode until one day, a small sliver of light broke through and light became brighter each day. We celebrated the tiniest victories: when he began to come to us for comfort, when his body no longer stiffened up when we tried to hold him, when he started to realize that we were his forever and our “shift” was never going to end. Over time, his big personality blossomed, and we were fully introduced to the most extraordinary little man.

Edison is a loving, hilarious, strong-willed and resourceful little boy. He is also quite stubborn and insists on living life on his own terms (just like his Mama!). As we continue to get to know him, it has become easier to meet his needs. We are also better equipped to determine which behaviors are trauma related and which are due to his sensory issues. It is still, however, very much a game of trial and error.

We have come such a long way, yet we still recognize that building attachment is like running a marathon. We will always be a work in progress.

While we attributed most of his behaviors back then to trauma and institutional life, even then I could see an ASD diagnosis in our future. I knew it was too early to be certain, so I hesitated to bring it up to my husband. We were able to start speech and occupational therapy (OT) through First Steps almost immediately after coming home, which helped us to address his feeding and sensory issues as well as provide us with a plan to work on his speech and motor delays.

His OT created a “sensory diet” for him that included Therapeutic Listening®, swinging, bouncing and deep pressure touch. I researched anything and everything related to sensory needs and read from The Out of Sync Child every night. Throughout this time, Edison saw several doctors and specialists. Before reaching his first year home, he had ear tubes placed and strabismus surgery to correct his exotropia.

Meanwhile, I found myself awkwardly flailing through social situations. His indiscriminate affection had me snatching him out of strangers’ arms and laps whenever I wasn’t wearing him. The more we stepped out into the world, the less I could avoid addressing his delays as people only seem interested in what children are able to do. Being honest about his challenges made some of them visibly uncomfortable. My primal instincts to protect him became even more powerful and habitual as the world became more invasive. I grew more protective of him through each interaction until I morphed into a mother grizzly, ready to maul anyone who dared set forth their own expectations of him.

Once I felt enough time had passed to where a doctor would consider evaluating him, I was already convinced that he had Autism. At that point I was already mentally prepared for it (thanks in part to our “worst case scenario” file review), so it was more of a means to an end. All that was left was to make it official in order to get my son the help he needed.

Almost one year after coming home, we found ourselves in a Pediatric Neurologist’s office. The doctor observed Edison as he threw oversized legos around the office while I filled out the M-CHAT-R™ (Modified Checklist for Autism in Toddlers-Revised), hoping to leave with a diagnosis for Autism Spectrum Disorder for my son. After a relatively quick exam, the doctor very matter-of-factly stated that it was “fairly obvious” that Edison has Autism. It felt strangely perverse to breathe that sigh of relief, but after months of feeling like we were spinning our wheels, it was comforting to have answers.

The moment we got home from the neurologist, I contacted First Steps to add Applied Behavioral Analysis (ABA) services. Our insurance company assigned us an Autism Case Manager and I found that all autism related services were 100% covered. Within weeks, we started ABA and I also added private speech therapy and OT services to his schedule. During the course of my research, I also found a Reggio Emilia inspired daycare/preschool that caters to children with developmental differences.

The changes in Edison were immediately apparent. We noticed improvements in just about every area: communication, play skills, eating, behavior, attention, etc. In addition to the extra speech and OT, the combination of behavioral therapy and the classroom environment made a world of difference. He is still not using words other than “Mama” and “Dada”, but he has become much more communicative using signs and we are learning to use pictures. Overall, he is becoming more independent each day.

I came to realize the real fight for us was not about getting a diagnosis or services. We are fortunate that we live in a state and school district where all of his required services are relatively accessible. Our IEP (Individualized Education Program) meeting went better than I could have imagined after reading so many horror stories from other parents.

For us, our biggest challenge is figuring out how to deal with other people. Even in 2017, there appears to be a major stigma surrounding autism.

Sadly, our society still perpetuates notion that autism is something to hide, fix, or be ashamed of. On the opposite end is the equally damaging tendency to treat people with autism as a novelty. All of these negative connotations become especially problematic when it discourages parents from seeking out an early diagnosis that could end up being a game changer for their entire family. After missing out on his first 20 months, I hate to think of how much more time we would have wasted had I not followed my gut. Had we allowed our insecurities and the fear of our child being “labeled” to dictate our actions, it would have cost us valuable time and resources.

Our son’s autism diagnosis opened the door to a world of opportunity that I am forever grateful for.

Parenting a child with autism comes with it’s own set of guilt-inducing pressures from the outside world that can be soul crushing if you don’t find your balance quickly. We will always question ourselves and worry that we are not doing “it” right or doing enough to help our child. I have learned to accept that I can’t possibly be prepared for everything. Nevertheless, I know I am doing everything in my power to give him the best possible outcome.

Despite the occasional awkward looks of discomfort we may receive when sharing Edison’s diagnosis with others, we have always found it more effective to be open and honest. We often hear that we should not let our child’s autism define him, but for us, that advice feels reductive and disingenuous; it implies that autism is a separate entity that has invaded our lives. It is part of him and without it he would not be the same person.

The reality is that autism affects my son’s experiences every day of his life. In some ways, we are living in a different world than everyone else. Denying that reality does nothing to help Edison, and it sends the wrong message by reinforcing the sense of otherness. In my efforts to raise my son to be a compassionate, confident human being, I have tried to cultivate an atmosphere of openness and acceptance as my own small way of fighting the stigma.

Edison has changed our family in so many ways for the better. He has brought more joy to our lives than we ever imagined possible. His smile is an everyday reminder of how thankful we are that we did not give in to fear during the adoption process. As I watch him approach each challenge with that quiet determination of his as the world goes on around us, I am thankful that fear did not stop us from getting the early diagnosis that helped him to get to where he is now.

He continues to amaze us every day. Our family may do things a little differently than a “typical” family and our lifestyle may not look “normal” to some, but this is our normal. This is my perfect family.

I wouldn’t change a single thing.

– guest post by Valerie

One response to “Trusting My Instincts”

  1. Rosa says:

    Can I say how very, very proud I am of you mija? What an enlightening story for parents of children with autism and what hope it gives. Execrllent!

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