Hello and welcome!
I’m so glad you’re here! Two years ago my (now seven year old) son was “officially” diagnosed with Autism. Well, technically it was PDD-NOS (pervasive developmental disorder-not otherwise specified), but is now (according to the psychologists) just being absorbed as “autism”.
In the beginning
My son was a whopping ten pounds at birth, a healthy, happy, (chubby chubby) baby. He hit all of his developmental milestones, many times early. He was talking by 11 months old, I even have sound clips of him singing “Twinkle Twinkle Little Star” (it breaks my heart to listen to it now). I thought for sure that he would end up being an early talker like my eldest son had been. His first year and a half showed all the signs of a normally developing child.
When he was around 18 months old things began to seem a little bit off to me. I had some signs that may have seemed more “autistic-like”, but unfortunately they weren’t the signs on the “Developmental Milestones and Red Flags” checklist that goes home with us at the wellness check-ups…the scary “red flags” of autism that we obsess over, wondering if each and every little movement is normal or not. My son made eye contact with me. He would ignore me when I would call his name, but I also knew he was listening because he would laugh and look at me from the corner of his eye when I would say his name in goofy ways to get his attention. He didn’t stim or hand flap. He didn’t sit on the floor and spin wheels for hours. He didn’t color code or group like-objects. He didn’t line stuff up. He wasn’t uncoordinated (quite the opposite actually). He could follow commands easily, loved to pretend play (still does). He had a great appetite and was totally fine with variety. Above all, he was (and still is) the most loving, affectionate child with a smile that can melt your heart.
Flags of a different color
My “red flags” weren’t exactly red. There were things he did do that seemed a bit further left of normal (based on my experiences with my older three kids). I definitely had alarm bells quietly sounding off in my head for about four years prior to his diagnosis (trust your instincts moms and dads, your gut always knows). His motor skills were super advanced…like spiderman-advanced. Around 11 months he tried to run before he even had walking under his belt. He was walking backwards and hopping around age 1. By 2 he could jump off the back of our couch and land like a cat…with no impact. Sometimes he’d launch off a windowsill (YES a windowsill) into a perfect tuck and roll across the floor (would’ve made a seasoned gymnast gape in awe, no joke). He could do handstands and was making attempts to walk on his hands. I seriously thought that this kid’s calling was going to be in stunt work.
While the super impressive motor skill stuff was going on though, I noticed that his progression of speech began to slow almost to a standstill. No worries I had thought, his older sister (by a year) didn’t start really speaking until she was 3, there was time. I figured it was because he had three older siblings, (why talk when everyone does for you) or maybe he was just more focused on the part of his brain that controls his motor skills.
He had peculiar fascinations with doors and cupboards. I remember how he would sit inside the bottom cabinet of one of the storage towers on our entertainment unit for long periods of time. He would push the door open really hard with his foot and let it close, over and over again. One particular night I was watching him do this, trying to see what he was doing exactly. I finally realized he was looking at the hinges, trying to figure out how they worked. After that I always noticed his fascination with stuff like that…or studying the inner workings of anything with a motor.
Not too long after that he began humming, and wish I could say it was a song but no, just a constant hum. It began taking the place of any effort to say words, and then…all he did was hum, continually, for everything. His food preferences became very limited. All he wanted was carbs. He became deathly afraid of the bathtub around 3 1/2, which lasted nearly two years. If you were in earshot of my home during bath time you would’ve been certain a violent murder was taking place. There was absolutely no interest in potty training by 3, not even an awareness of it. When he turned 4 there was still no willingness or interest to try and go (we are still in pull-ups at age 7 and working on bathroom independence).
Shortly after the humming began to dominate, he started to cover his ears a lot. He still made eye contact, still followed commands, played with toys in a “normal” way, enjoyed playing with his brother and sisters etc, but often sought out a place where he could be alone for a larger portion of the day. He loved (and still does) electronics, he is very intuitive/savvy with them. All he seemed to want to do was play games on the iPhone or iPad all day. So, I loaded them with all things educational, ABA flashcards, alphabet games, you name it. I begrudgingly realized the only way I could teach him was going to be through those devices, so I used them. He adored music, specifically classical and soothing styles. I would find him often walking around listening to classical pieces that were in my iTunes library on my phone. I was always chastised by “well-meaning” relatives for allowing him to have it all the time…but they just didn’t get it, it wasn’t about pacifying him, it was about trying to reach a child that seemed like he was slipping into a world of his own. I stressed heavily about the amount of radiation that was said to come off of the devices, but at some point…you just run out of options and you have to choose the lesser evil.
For several years I scoured articles and books late at night, desperately trying to figure out what was going on with him. The doctors were useless and I began to not trust them for many reasons. Of the many books I have read, one was called Late Talking Children – The Einstein Syndrome (by Thomas Sowell). It described my son almost perfectly. Kids that were ridiculously intelligent, quirky behaviors, attraction to classical music, focused on motor skills more than communication…commonly mistaken for autistic. I kept making mental checks in my head thinking, maybe there is something to this, the similarities were uncanny. Most of those children grew out of these behaviors so I thought, maybe he’ll grow out of it too? Looking back I know there was validity to my confusion (he baffles all the therapists and psychologists even now), but I also think I was just in denial.
When he turned 5 years old, he became increasingly fascinated with watching fans spin. Anytime something seemed to stimulate his senses he would ball his hands into fists while tensing his body in excitement. His speech was virtually non-existent. Things he could say when he was 11 months old he was now unable to say at 5. All we could get was the continual humming and covering of his ears. At least until the screaming began…blood curdling screams. I guess it dawned on him that he wasn’t able to communicate in a normal way so he used screaming to verbalize when something wasn’t right or he needed something. I swear it was like a switch went off in his brain, I almost didn’t know who he was at that point. On top of that we began to have problems with elopement. I found him outside wandering a few times in nothing more than a t-shirt and pull-up. Scared out of our minds, we had to completely reconfigure the way that we were dealing with the locks on our windows and doors, as he tried to escape from both (this is another post entirely that I would like to cover regarding “runners”, which will be coming soon). That time period took a heavy toll on my family, my marriage and my children. My kids had a very hard time understanding what was going on with their little brother and dealing with their own feelings of worry, frustration and confusion.
I knew at that point we had to get a formal diagnosis. He needed help. We needed help. It took awhile to navigate my way through a very murky, disorganized system to find the right people to speak to. I had him evaluated by two different psychologists (always good when you are able to get a second opinion). Both deemed my son “on the spectrum” even though they agreed, his case seemed quite atypical in many ways.
I felt numb. I guess it’s one thing to reside in a world of “suspicion” because it’s not actually real yet. It doesn’t feel as heavy because there are still unknowns through the lack of confirmation/diagnosis. But now I had my confirmation and I felt like an idiot for wasting so much time.
About two weeks after my son’s 5th birthday my dad had mailed him this beautiful glass sun-catcher in the shape of a big circle that suctioned to the window as a belated gift. It made the neatest rainbows all over the room, he was so captivated by them. I hung it up in the playroom where he spends much of his time so he could look at them. One afternoon I was sitting in another room when he came out to hand me his dead iPad (so I would charge it). He had a huge cut on his foot, completely unaware that he was bleeding. After tending to his wound, I went into the room to find the prism shattered in pieces all over the carpet. There was a disc of rainbow-lasered vellum paper (that helped make it so brilliantly colorful) lying on the shelf. He must’ve been studying that prism and then broke the glass in it on purpose to try and figure out how it worked. It was at that moment, as I began picking up the shards of glass, that I think I truly accepted my little boy was different. It was in that moment, feeling as broken as the pieces of glass held in my hands…that I finally cried.
When we come to acceptance, we allow ourselves to open up to the reality of the situation and the array of emotions that come rushing in with it. Grief, guilt, anger, confusion, worry, fear. Questioning…what will be our life to come, what will be their life to come? Will they ever talk? Will they be able to get through school? Hold a job? Marry? Have kids? Every single day I am silently tormented by these questions. Nobody is ever really prepared to become a special-needs parent. It just kinda gets tossed in your lap and suddenly, you have to find ways to deal.
“I stopped looking for the light, decided to become it instead”
There are definitely a myriad of unknowns ahead, but I’ve realized that the unknowns don’t always have to mean negatives. Nothing is ever a closed door unless you allow that door to close. Nothing worth doing is ever easy. So just like my son did when he was 2, we’re going to sit in this cabinet together and when the door begins shutting we’re going to kick it open, over and over…until we get it figured out.
That is the heart and soul of this blog, pushing the doors open and figuring it out. I’ve learned so much and I want to share it. Real talk. Real solutions. I don’t romanticize autism. It is a neurological condition resulting from an auto-immune disorder. I believe autism can either be healed or vastly improved in the majority of cases. Not enough people know enough information. There is no magic pill. There are no over-night fixes. The healing process is agonizingly slow, it’s overwhelming, it’s hard and above all…you have to be willing to stick to it. But I can tell you personally what I am doing here is making a difference in my son, I am seeing it with my own eyes. I want you to feel the same kind of hope that I have now that I’m beginning to see these changes in my child. He has progressed in speech to the point he is officially considered verbal. There’s no word I can say that he is unable to repeat.
His awareness is also changing, seeing the fog lift from his eyes has been amazing. I realize now that the eye contact he was making was veiled before. He sees us now…and it’s not something easily put into words…it’s something you know when you experience it.
We still have loads of ups and downs, or as I like to call it; two steps forward, one step back. However, I am finally beginning to see less regression and more progression.
I chose the picture for my blog’s banner because it visually represents the day that our lives suddenly just changed course. The quote helped me push through the grief and put one foot in front of the other. The blog is to share this journey with others. To help and teach, to celebrate and vent, to listen and gain perspective. Nobody understands this life better than we do.