I’ve been waiting FOUR years for this gift. Let me back up to the beginning…
On April 18, 2018, I met my son for the first time. He was living with a foster family and then transitioned to our home about a month later. I am not my son’s biological mother. I didn’t carry him in my womb. But, I love him fiercely and from day one, I promised myself that I would do whatever it takes to support him, to provide what he needs, to help him feel loved and desired.
From early on in his infancy, I could tell something was a little different. I couldn’t put my finger on it exactly, and he was our first child, so I pushed the thought aside telling myself, “you’re overreacting.” (Side note - I’m a nurse, so I tend to overanalyze things when they feel even the slightest bit askew.) I also kept in mind that my son experienced trauma leading up to his birth and immediately after his birth. Biological mother used substances when she was pregnant, which I knew could potentially cause some behavioral challenges down the line. I also knew that my son was born at home and was transported via ambulance to the hospital; trauma. There were also reports of neglect by his birth parents in those first couple days in the hospital, erasing any hope to form a secure attachment with anyone in those critical hours after birth; more trauma. From before he was even born, the odds were stacked against him. I reminded myself of all these factors as I watched my son develop, falling behind every milestone along the way.
Before my son even hit his first birthday, he was getting physical therapy. Then we added speech and occupational therapy to help give him the tools he needed to continue making progress. Then, at his 18-month well-child appointment, all the thoughts I had been pushing aside began to be confirmed. It’s routine for healthcare providers to administer an MCHAT screening at the 18 and 24 month visits. The MCHAT screening is a questionnaire that is used to screen for Autism. The healthcare provider reviews the parent’s responses, scores the results, and may have a follow-up conversation with the parent if there are concerns. Well, I completed the MCHAT and knew in my gut that all the “signs” I had been seeing weren’t just me overanalyzing. Our pediatrician took one look at the results and immediately made the referral to a developmental pediatrician for further evaluation.
Within a couple weeks, my son was being seen by the developmental pediatrician, who we’ll call Dr. M. We talked about his birth history and developmental milestone achievement up to that point. Dr. M completed an ADOS assessment, which is a standardized diagnostic test for assessing Autism. Before we even left the building, Dr. M let me know that the scores indicated that my son was NOT Autistic, but that he’s just “quirky” and that he would continue to monitor. So, that’s what we did. We continued to monitor every six months, with the same discussion at every appointment, “he’s making progress, he’s quirky, continue doing what you’re doing.”
At one point a couple years ago, I felt like I was at my breaking point. I was spending hours researching online, reading all the parenting books, sending questions to all my occupational therapist/psychologist/counselor/special education teacher friends; everything you can think of, I was doing it. My son was constantly dysregulated, meltdown after meltdown, sometimes lasting an hour or more; kicking, screaming, crying, biting, spitting, pushing, running, etc. Nothing I was doing was helping him get out of fight or flight or be able to regulate. His quality of life seemed awful. During the day he was constantly dysregulated, and at night he was barely getting any restful sleep. I expressed my frustration and concern for my son’s health to Dr. M who then signed me up for a parenting class. A parenting class!! As the people pleaser that I am, I obliged and went through with the class. Did it help? Absolutely not.
I finally bit the bullet and got over my shame and requested another full evaluation. Dr. M completed another ADOS with the same results, letting me know he wasn’t on the Autism spectrum because he’s capable of joint attention and is social. I tried to explain that he’s capable of these things, but does them in an atypical manner. I also let him know that my son’s fear appeared to be getting worse. He couldn’t walk into the restroom in our house alone, or walk around to the other side of the stairs alone. He couldn’t get out of bed without an adult coming into the room, or take a single step into a public restroom. Dr. M diagnosed him with anxiety and referred us to our state’s Child and Adolescent Mental Health Division for in-home therapy. While I was grateful for the additional support services, I still didn’t feel like developmental delay and anxiety painted the full picture.
Fast forward about a year. We’d been seeing Dr. M for almost four years. I wanted a second opinion, but was too scared to ask him for it. So, I asked my son’s pediatrician if he could make the referral. We have VERY limited choices where we live, so the pediatrician was going to have to refer out of network, which had to be approved by both the Chief of Pediatrics AND the Chief of Developmental Pediatrics. After much deliberation, we had our referral to go out of network. I called the out of network provider, trying to figure out how to schedule an appointment. The front desk lady let us know that that provider doesn’t accept our insurance. I let her know we had a referral, but she insisted that the provider doesn’t accept our insurance. After going back and forth with our insurance provider, I went back to our pediatrician and let him know the out of network provider wouldn’t take the referral, and our insurance wouldn’t reimburse us. Then, we looked into seeing someone within our network, but out of state. Luckily, I was able to get that approved, so out of state we went.
While we were waiting in the lobby before going into our appointment with the developmental pediatrician and developmental psychologist out of state, every little thing was making my son upset. At most of his appointments, he’s usually able to mask, or “keep it together”, but at this appointment, he was dysregulated, which is how he spends most of his time awake. The providers saw the “real” him. A week later, the out of state developmental pediatrician called me to discuss the results. He confirmed that my son is Autistic. Finally. After four years of trying to convince Dr. M, and this past year trying to convince my son’s school, we finally have an answer; Autism.
You might be wondering how that’s a present. While I’ve spent most of today (the day I got the call confirming Autism) on the brink of crying, trying to process my emotions, I feel so much relief. My son’s Autism diagnosis is a present because it provides clarity. It’s a present because all of the tears, sleepless nights, and advocating were worth it. It’s a present because now we’ll be able to access resources my son has deserved but missed out on since he was a toddler.
It shouldn’t have to be this hard. Trust your gut, mama. Keep advocating. You got this, and you’ve got a whole sisterhood cheering you on.