I thought the hardest part of being a mom was constantly breastfeeding, twenty hours of the day that small fragile head attached to my body. Then, I thought for sure the hardest part of being a mom was the many nights without sleep with an infant who refused sleep (through the age of four!). While I still think four years of sleepless nights with an energetic child bouncing off your head because “he can’t turn his brain off” is hard…it’s not the hardest.
Pouring out your cup to fill theirs, that’s hard too. Suddenly forced to divide that only-child time with two new household blessings was hard. Watching peers bully and/or ignore your child at the playground, that’s heartbreakingly hard. Having to get his eyes dilated every 6 months to check on his genetic eye condition is only hard because of the screaming car rides home. Having to hold your son’s arms so he stops hurting himself during a mega meltdown is hard. Encouraging protein shakes and a diet of mostly carbs because he refused to eat meat was easy, but having to go to the dentist over cavities that need oral surgery is hard and culpable. Remembering to follow routines was easy and welcoming, but the hard part came when we forgot the rituals or couldn’t do them. Having to Having in-home Birth-To-Three, Speech Therapy, and Occupational Therapy services scheduled for home visits was challenging due to our living arrangements…and canceling those services was even more difficult.
Surprisingly, out of the many difficult challenges motherhood threw into my lap, actually receiving an autism diagnosis was not hard. We already knew the diagnosis long before we scheduled that appointment with a woman named Lindsay. I remember a phone call I ended up on with the Early Autism Project, where I paced on the grassy front yard. It was early on that we decided there was no need to pursue an educational diagnosis or medical diagnosis, because it wouldn’t benefit our daily rhythms. It wouldn’t have mattered anyways, because he was still him and he was still gifted to us by the Lord and we loved him. The initial appointment was only scheduled as I was watching him open and play with every single gym locker in the hallway of the rec center because we arrived late to toddler gym time and it was too loud to go inside. The realization dawned on me that while I knew that if I forced him into that gym, he’d have a screaming fit, hardly anyone else would know why or offer a compassionate hand versus a frustrated scolding. In that moment, I decided that maybe there was some benefit to him receiving such a label, and faster to pursue services with a diagnosis has already been given.
That January, he received a score of 33 on the CARS2-ST, indicating Mild-to-Moderate ASD. On the ADOS-2, he received a score of 11. He was diagnosed with Level 2 ASD in social communication and restrictive/repetitive behaviors. He also was diagnosed with a Language Disorder.
At the beginning of summer, months after the medical diagnosis, we had to go to the local school district for an educational diagnosis as well. On the Goldman Fristoe Test of Articulation he received a raw score of 43, standard score of 69, and percentile rank of 6. On the Battelle Developmental Inventory assessment, he received an Adaptive score of 88 (21st percentile), and 102 (55th percentile) on Social-Emotional scoring. On the Cognitive/Early Learning Skills Domain, he scored 100 (50th percentile). Based on the school’s evaluation, he was given an educational diagnosis of Autism and Speech/Language Impairment. He was determined to be eligible for special education, given an IEP, and offered Speech Therapy services.
After that diagnosis, I thought sharing the news of his diagnosis would be hard…or difficult to keep hidden if that’s what we decided on. Then I figured the hardest part would be deciding whether to accept special education services and what would that path look like for him the rest of his life.
And then, it stopped being so hard because I stopped looking at it as trials, but as blessings…and I thanked God, since He calls us to be thankful in ALL circumstances, not just the circumstances we are happy with (Philippians 4:11, 1 Thessalonians 5:18). That has made all the difference. And Paul was right when he said, “That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. (2 Corinthians 12:10)
I miss breastfeeding because of the peace associated with just the two of us. My sleepless toddler-mom nights were filled with cuddles and the closest alone time I’ll probably ever have with him. Filling cups inherently fills my own because of that switched mindset. Our two extra blessings helped blossom additional language development (and sass!). Watching him enjoy playing and exploring alone, or finding the amusement of people-watching. Witnessing the first friend made, the first time he approached someone with well-rehearsed dialogue. The screaming car rides after eye dilation are still hard, but communication is difficult and it’s hard for him to explain or listen to reasoning. The joy I’ve found in watch him use sign language when he doesn’t feel like speaking. Being able to be so in tune with what he was trying to communicate helped reduce meltdowns. I’ve welcomed the challenges because it seems that the reward is greater.
Regarding all of these testing results, there was a lot that we didn’t agree with, especially pertaining to the school’s analysis and percentile placement. Those paper assessments weren’t able to record that he was misinterpreting emotions and decided to pull out the goofy trait, hiding away the fact that he can count higher than they asked him to and that he did in fact know his ABC’s…performance anxiety was clear but what box was there for them to mark to note that? Of course an out-of-the-box kid will struggle to conform to the cookie cutter educational assessments, to the curriculum made for a group of 15-30 kids in a classroom, and to the expectations laid out by academic standards. I am still grateful for those answers, despite some of my disagreements, because it reminded me that he needs out-of-the-box parents that can support him at his level, instead of forcing him to a level created by state standards. I’m also so grateful because this official diagnosis is a comfort to know that if needed in the future, he’s offered some peace and answers about seeing the world differently.
God didn’t make any mistakes. Fish is His handiwork, created in Jesus to do good works (Ephesians 2:10). I wouldn’t trade a single hardship for the blessings He’s bestowed on us. I couldn’t possibly explain on this blog how especially wonderful my son is, and how he lives up to his name as a “Fischer of Men” (Matthew 4:19).
“Through the blur, I wondered if I was alone or if other parents felt the same way I did – that everything involving our children was painful in some way. The emotions, whether they were joy, sorrow, love or pride, were so deep and sharp that in the end they left you raw, exposed and yes, in pain. The human heart was not designed to beat outside the human body and yet, each child represented just that – a parent’s heart bared, beating forever outside its chest.”
― Debra Ginsberg
“Think of it: a disability is usually defined in terms of what is missing. … But autism … is as much about what is abundant as what is missing, an over-expression of the very traits that make our species unique.”
― Paul Collins, Not Even Wrong: Adventures in Autism
Additional reading: Click here to read a beautiful poem titled, “I am Special Just Like You”, authored by Jackie Bielinski.
Samantha Sali 