If I Could Turn Back Time

March 17, 2021 was the day Becca was officially diagnosed with Autism. She was 21 months old, and it was the culmination of months of evaluations, interviews, and appointments, and we had received the answers regarding the concerns we had about Becca's development.

I remember the psychologist meeting very well. We were still in the middle of the pandemic, so we met with the doctor virtually. She went over the results of all the evaluations: educational, speech, occupational, physical, psychological. And they all pointed to the same thing - our Becca had met the diagnostic criteria for Autism Spectrum Disorder (ASD) on each and every one.

Then the psychologist explained that Autism exists on a spectrum, and that there are different diagnostic levels that point to the level of support that is needed for the individual to thrive: ASD 1 - low support needs, ASD 2 - moderate support needs, and ASD 3 - high support needs. As she went over the results of each evaluation, and Becca's strengths and deficits, she proceeded to tell us that Becca's scores placed her on the severe end of the spectrum with high support needs. Her official diagnosis was ASD 3 with Global Developmental Delay (GDD). The psychologist explained that Becca may never learn to communicate verbally and that she would likely need substantial support for daily functioning.

I needed a moment to collect myself. I walked away from the phone to cry while my husband continued the conversation with the psychologist. We got set up with Early Intervention Services, and embarked on a journey that we still find ourselves on today.

But now, four years later, things seem quite a bit different. Sure, Becca still does not communicate verbally, and sure she still needs quite a bit of support, but we have experienced so much over the last four years that I wish I could go back to that exact moment. I would tell that scared, grieving mommy so many things.

I would first tell her that those evaluations do not define her daughter. Those evaluations give a snapshot of her performance on the days of the evaluations. But they don't say anything about her daughter's future, about how intelligent she is, or how wonderful and bright her personality is. I would tell her that moving forward there will be all sorts of reports, and the first few will be discouraging because they won't give the full story of who her daughter is, and that it will be depressing because it will feel like everyone will focus on her daughter's deficits. But I will also remind her that those deficits need to be documented to justify the hours of supportive services she will qualify for.

I would also tell her that the road ahead would be full of challenges - lack of sleep, cooking multiple dinners every night, overstimulation, judging looks from others in public - but would also be full of some of the most fulfilling experiences in her life. I would tell her that her daughter is one of the smartest, most loving people I know. I would remind her that non-verbal does not mean not communicating, and that she and her daughter would learn how to have entire conversations using non-verbal means. I would tell her about the great strides her daughter would make over the next few years, about how by the time she is turning six she can speak some phrases on a tablet, that she can recognize her name, how she follows directions and plays with intention, how she understands everything being said to her, and that she imitates her mommy and her Papi and sings and dances with Wela, how she smiles at her grandmother and even has a bestie at school. I would tell this scared, grieving mommy that it's okay to mourn the loss of what she believed her parenting journey would be, but I would also remind her that while "different" or "atypical" can be challenging, it can also be quite beautiful.

I would explain that her daughter is more than those pesky CDC milestones. That her daughter may meet some but skip others, and still may meet others later than what is typical. I would explain that childhood development is not always a linear process, that there may be periods of progress and some periods of regression. I would tell her that it's normal to worry about her daughter's future, that it's normal to worry about what happens when she is no longer around. That's all part of the journey, but it's important that she not get stuck there. Instead, she should use those worries and anxieties to create a plan for teaching her daughter how to live in this world independently.

I would encourage her to focus on her daughter's needs and not focus so much on what anyone else thinks. I would tell her that there may be days where she has to get on the floor at Target to sit with her daughter while she needs a minute, that she may need to walk her out of the restaurant to give her a break, that she will need to walk around with noise-canceling headphones, that she will have to support her daughter through sensory meltdowns, and that there may be people who don't understand. That there may be people who make insensitive comments or cast judgmental glances. And that's okay. We don't need to focus so much on what everyone else thinks.

I would remind her to surround herself with supportive people, and to have discernment when it comes to miracle treatments that prey on the desperation of parents and grandparents. I would remind her to guard her heart and her mind, and to remember that Autism is not a death sentence. I would remind her that her daughter is first and foremost a precious child, knit together by GOD in her womb, and that GOD does not make mistakes. I would tell her that there will be moments where she will question GOD, but that in time, that same GOD will help her toward a journey of understanding, and she will have the wonderful privilege of witnessing how her daughter will touch so many lives.

And today, as we approach Becca's sixth birthday, I say the same to any parent who is struggling with a recent diagnosis or to any parent who may have some concerns about their child's development and isn't sure what to do. Hard as it can be, I urge you to trust the process. Get the evaluations done. Go through the interviews, have the tough conversations that we don't want to hear or accept. Do not take the approach to just "wait and see". Because as hard as it is, our children need us to gain the skills they need to navigate this world. And part of that might be accessing additional supports, which we can't do without getting the evaluations. Our children could be losing out on supportive services that will give them a head start as they navigate their early lives.

To the parent just starting this journey: you are seen, you are heard, you are understood. And you are also your child's champion and saving grace. Breathe…you don’t have to figure everything out today. Find your people. Trust your instincts. Celebrate the small victories. They’re actually the big ones. And remember that your child is still the same amazing person they were before the diagnosis. They just might need a different road map than most to navigate this world.

If you’re feeling lost right now, it's okay to reach out for support. Ask questions. Cry if you need to (we all have and I still do). But know this - you’re not alone on this journey. You've got this!