When my youngest son was born, my husband and I were hit with that kind of punch-drunk love that only new parents know… the my “heart grew three sizes that day,” rebirth kind of love. The funny thing is that I had worried for nearly nine months prior that I wouldn’t have enough room in my heart for a second child – that I’d just given all the love I had to give to the first one and that I’d plum run out.
For the first few weeks at home, I battled with breastfeeding and the usual new mommy stuff, worrying all the while that I wasn’t sharing my attention and affections equally with his big brother. In all the hubub I’m not sure if Cole changed, or if he’d been a little off all along… but sometime close to his first birthday, we came to find that he was different from other kids his age. He didn’t respond to his name. He had a very limited diet. Small grievances became complete meltdowns. He reached all of his milestones at first, but achieved them at what felt like the very last minute.
We gave him the benefit of the doubt. Following a certified genius big brother is a hard act to follow, and we tried not to compare him, but still something wasn’t right. When he was two, there came a moment when I looked back at our life and how dramatically it had changed since Cole came into it. All of the changes were done gradually, without our noticing. We’d stopped going to places that were crowded; a passion for family-friendly concerts took a backseat; date nights were relegated to fewer and fewer nights, based on the availability of his grandmother – the one person who understood him well enough to contain his rage and fits for a few hours while we decompressed. Dinner became a nightly horror show, and poor Jackson (our oldest) was in on our game, giving his brother whatever it took to quiet him. Everything about our life had shifted just slightly in order to appease and calm our son.
In July of 2011, in-home visits with behavioral and speech aides that were provided by the school district yielded the revelation that he likely had sensory issues. We immediately sought out private occupational therapy to help Cole overcome sensory issues. I was given a copy of “The Out of Sync Child” and some weighted blankets from thoughtful and compassionate friends of friends who’d endured the difficulties of sensory issues with their children. As we implemented small changes into Cole’s daily routine, we started to notice he was beginning to become calmer. First, we added weighted blankets. Next, we began brushing him every two hours while he was awake using the Wilbarger Protocol and a sensory brush. The technique was meant to engage and align the central nervous system, and it seemed to truly calm him for a while.
The more I read and reached out to therapists, the better I understood my child. For a long time, I’d felt that I was a failure as a mother, that I’d connected with my oldest and done well with him, but that my youngest must either hate me or be so fundamentally different from me that we just could not see eye to eye. What I learned as I devoured the information I found on sensory issues was that he was fundamentally different. His brain worked differently. Colors, smells, sounds, clutter, textures, situations – all of these colored his perception of the world and I simply needed to start shifting my perspective to meet his and I would be able to understand and get along with him.
In September, in a visit that I thought was only a formality ruling out autism, Cole was diagnosed on the autism spectrum – a diagnosis that knocked the wind out of me, both because of the enormity of the label on my beautiful little boy, and because I hadn’t been expecting it. He was developing a sense of humor. He was attached to me. In my perception, autistic kids weren’t as connected. Cole was diagnosed with Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), which is a high functioning form of autism.
Initially, I took the diagnosis and ran, using it as license to move forward with therapies we’d thought about, but which insurance wouldn’t grant just for sensory disorders. I didn’t process any personal reaction to it, and I didn’t know if I necessarily agreed with it. (It didn’t help that the neurologist said, “Just because I labeled him PDD doesn’t mean that another neurologist would,” because I needed something concrete to hold onto and digest.)
About two weeks after his diagnosis, a friend sent me a Facebook invitation to purchase a puzzle piece necklace in support of autism and I finally broke down, because I wasn’t ready to call my son autistic yet, let alone wear a puzzle piece necklace. I felt guilt that the same term could be used for my tempermental sensory boy and my friend’s non-verbal, non-social son. It didn’t seem that we were bad enough off to have “earned” the right to use that term. I felt guilt that I didn’t want to wear a puzzle piece necklace. I felt guilt that maybe I’d done something to make him this way.
At first, we didn’t know if we should tell anyone. 50% of kids with PDD, if given the therapies they need in a timely manner, grow up to be so high functioning that they attend regular classes with minimal intervention. We didn’t want him carrying around a label that would stigmatize him if he would be “normal” by all objective standards in just a few years.
Today, a little more than three months later, I find that we are still finding our way. I have accepted it now, and I think my husband is now digesting the enormity and permanence of this diagnosis. We attend both private and public (school) therapies for Cole and conduct therapy at home. We find that some therapies allow Cole to make large strides (VitalLinks was the most dramatic), while others aren’t as effective, and that all of them must be changed out from time to time in order to continue to be helpful.
We tell friends and family that our son is autistic, and have learned to accept their judgment (“He isn’t THAT bad! You’re being dramatic.”) and their support when it is offered. We are doing absolutely everything we can for our son so that he is the best he can be and we are learning to turn it over to God one piece at a time, because we just can’t know and do it all on our own… and we ask for help early and often. (Thank you, Pat.)
But, most amazingly… we have found this diagnosis to be a gift. Every day I find myself falling in love with Cole a little more. With this diagnosis, we have gotten a more profound and accurate light shone on who our son truly is. Without this information, we might not have ever found a way into his very private world.
Cole is brilliant, and we may have missed that altogether. He has a photographic memory, and incredible auditory retention. He is funny and he is kind. So many attributes have come to light with our shift in perspective, and more are being drawn forth through therapy. As we learn to see things from his point of view, providing him with the things he needs becomes much easier.
Potty training was a breeze, once we realized that he’s a stickler for rules, because he thrives on order and prefers things to be black and white.
To any moms reading this who have recently found out their child is on the spectrum, I would invite you to email me. You’ll need friends in similar shoes. Next, read “The Out of Sync Child.” This book applies to kids with ADHD, ASD and more. Finally, I would encourage you to pursue therapy such as OT, speech and listening therapy with all that you have and all that you are. It can make an incredible change, and allow you to grow closer to your child.
And… (this can’t be stressed enough) never underestimate the importance of asking for help. If it weren’t for an incredible mother-in-law who gives of herself so completely, and helps with transport to therapy and serves as my sounding board, I don’t know where we’d be.
So, today we move forward. We think we know what we’re doing but a new challenge will most certainly come. Maybe he’ll stop eating again, or he’ll stop talking again, or decide he has no hands again and try to eat with his wrists (that happened), but we’ll get through it through prayer and the support of others in our same shoes… all the while coming to know our out-of-sync angel in a deeper and more meaningful way.