This was written months ago. I've read and re-read it, and am finally ready to share. Here we go.
My nearly-six year-old son just tip-toed into our bed-room. “Mommy? Daddy? The Monster hurt my head and my arm! Mommy saved me from the monster.” He lay down snuggled next to my husband and all was peaceful in the family bed once more. But that started my wheels spinning and even though it isn’t even quite 5 o’clock in the morning I couldn’t go back to sleep with his words ringing in my ears: “Mommy saved me from the monster.” Because that is exactly what I am trying to figure out how to do. Back in December, Normy was diagnosed with an Autism Spectrum Disorder (PPD-NOS).
As a baby he met his milestones right on time. Maybe a touch slow to craw and walk he was still well within the bell-curve of “normal.” He smiled early and often. It was a face-splitting smile that was like looking into the face of the Buddha. The only milestone that didn’t fall neatly on the path was babbling. Normy really never babbled. He had this multi-pitched vowel sound. Not really a shriek or a scream, it was like he was joyfully hollering at you. While the other kids born around his birthday were saying “mama”, “daddy”, “doggie”, “ball” and “dolly” Normy was still just making vowel sounds. When those same kids were saying, “Mommy, I love you.” Normy wasn’t saying much of anything. By the time he was three he had about 25 words that he used as singular utterances. Car, Mama, No, Jack, Daddy, Georgia, Drink… In fact, his sister who is twenty months younger than started calling me “Mama” before he did. I had been a mother for 31 months when a child named me their mother for the first time. (And I know some mothers of autistic children will never hear it said.)
But, even with Norm’s speech delay, we still didn’t worry. He was an awesome three year-old! He played great independently, spending hours lining up cars (in a mostly non-obsessive way) and taking trains around his track. He did puzzles and he SMILED. He wanted to be with us and be social. He wanted to play with other kids, though it was tough because the only way he knew to get their attention was to body-slam into them or clothesline them as they ran by. His pediatrician assured me it couldn’t possibly be autism, “Look how socially motivated he is!” And though I asked her the question, her answer resonated with me and I forgot all about it.
We did put him in an Early Intervention Pre-school program for his speech delay. For two years he went five days a week to play with twenty other kids (some of them with diagnoses of autism) and we waited for him to start talking. So many parents had told us that Early Intervention was the key, and how after a short time in the program their kids had come out of their shells and started talking up a storm. “You wait and wait for them to start talking, and then once they do you wish they’d be quiet once in a while!” When he was two I thought, “Surely by three this will all be a memory and he will be talking like every-one else.” Then when he was three I thought, “Well, by five I’m sure he’ll be caught up.”
Five came very quickly and Normy still wasn’t speaking much. He had gone from one-word utterances to two and three-word utterances. Words were garbled, there were extra words, and even I could only decipher a quarter of what he was saying. He’d get so angry and frustrated he’d cry when he couldn’t get his point across… usually with regards to a perceived aggression or injustice relating to Georgia! It was during the closeout debriefing at preschool that his speech pathologist casually mentioned to me that she thought his speech issues could be the result of a tongue-tie. She said we might want to check it out. She said it so nonchalantly and we were so busy with summer travel plans and his birthday party preparations, her words didn’t sink-in immediately. Plus, how could he be tongue-tied!? That kid nursed like a champ; he was enormous as a baby! It wasn’t until I was away, and Smoochy was home with time-to-kill that he did some Internet research on “tongue-tie” and felt like the speech-path might be onto something. It occurred to Smoochy that we had NEVER seen Normy LICK an ice cream cone. I said, “I always thought he just like to bite them.”
“Yea,” Smoochy replied, “because everyone likes to plunge their teeth into freezing cold ice cream.”
He had a point. And the ENT we were referred to confirmed Normy had a VERY thick and restrictive middle of the tongue. She said the tip had probably worked itself free over time but his tongue was still inhibited from a full range of motion. (My breast milk must have been so plentiful that he only had to hold his mouth over the nipple to get a full meal!) She said surgery was a low to no-risk option that would definitely correct the physical problem. Whether or not it would correct his speech couldn’t be guaranteed, but it did seem like a possibility and she saw many patients who had success. We cried. All this time our FIVE year-old had been struggling and the solution was as simple as a little snip.
And yet, in the back of my mind was a tiny sliver of doubt. You see, at five the more Normy was able to say the more I realized what he was saying didn’t make any sense. I remember thinking: “Even with dramatically improved pronunciation, I’m still not sure I’m going to understand what he means.”
The “tongue-snip” (frenuloplasty) was a fairly painless event. There were a few days post-surgery where he was groggy and sad. And his speech got worse before it got better. But we expected that; he had to relearn how to use his tongue. But over time, and with continued work with two different speech pathologists his pronunciation has absolutely improved. There are glimmers of perfect “L” sounds that I’m not sure he would have ever been able to correctly pronounce otherwise. But, it was not the magic bullet I had been praying for.
I don’t know what shifted but all of a sudden there was mounting evidence to me that all was not exactly as it should be. Normy started reacting to loud noises by covering his ears. The grain mill, the vacuum in the entryway of a grocery store, loud trucks that would rumble by all sent him for cover. It seemed like every time I turned around there he was with his hands over his ears. He’d never liked his hair washed or cut but now it was like my fingers felt like razorblades to him on his scalp. One day I watched him sit down with a baby toy and spend over an hour opening and closing a door on it’s side. I let him do it just to see how long it’d go. And then the obsessive question asking started. It was like he would get stuck in some verbal loop. No matter how I replied or tried to redirect him he’d ask the same question over and over and over and over and over and over and over and over and over and over and over and over and over and over and over and over… What was going on here???
At the end of last year I stared asking our families, “Would you think I was crazy if I told you I was thinking of having Normy tested for Autism?” No, some of them had started worrying too. I asked the two speech paths he worked with if there was a chance he could be on the spectrum, and they both felt like we should explore it. So we did. We did the parent interview, the two hundred different fill-in-the-blank ratting scales, and finally the ADOS. When the data was sifted and the points tallied we had a diagnosis: a piece of paper that reads PDD-NOS. Pervasive Developmental Disorder- Not Otherwise Specified, one of the five Autism Spectrum Disorders (for now).
I can’t get into what that diagnosis means or doesn’t mean for us right now. I think we are still processing that. What hasn’t changed is our son. He is an AWESOME little guy. He is loving, and snuggly, he is stubborn and resilient, he loves cars and trains, and puzzles, and Ipad games. He plays t-ball and soccer and rides his glider bike like it is a part of him. And recently he has started talking clearer with more complex sentences and thoughts. He is going places and taking us along with him.
Smoochy and I have debated a long time about whether to write about it, and obviously we have decided to go for it. We are going to share his story, our story with you. Maybe someone will get comfort, or camaraderie, or be exposed to something new to try based on what we are doing. Maybe this blog can help us network with other families in the thick of it and we can learn from them. Maybe it can help friends and family better understand what this autism stuff is all about. Maybe Normy will appreciate having a record of just how far he’s come later in life. Maybe he’ll be angry I wrote about it. I’m not sure about anything these days.
Well, I take that back. There is one thing I am sure of. We will do everything in our power to help Normy reach his full potential… just like we will do the same for Georgia and Lola. That’s what parents do. As I was sneaking out of the bedroom to type this I heard Normy, still recovering from the images of his nightmare, say to Smoochy, “Daddy, protect me!” If only it was as easy as chasing away the monsters under his bed.