Monday, January 30, 2012

Turning Two and an Ultimatum

Nobody ever wants to admit that there might be something less-than-normal going on with their child. No one. Sometimes it's undeniable, other times it's more comforting to listen to those voices who poo-poo the concerns spoken in quiet voices of frustration. G's quirks and struggles became a major source of tension between my husband and I, causing a rift and marital struggles only he and I truly know. Suffice it to say that when I can attest to the statistics of couples with special needs kids having a higher rate of divorce because of the stress. I can totally see how that's true. My teacher mind was always screaming at me over G's lack of verbal communication, his fits, his inability to eat or even chew most foods, his night terrors, his self-injurious behaviors, his anxiety, night terrors, and inability to even make eye contact with a stranger. My husband was working overnights so he worked all night and slept all day, leaving me essentially a single mom of a preschooler, an intensely high-needs toddler, and a newborn. He had voices around him telling him G was just a boy, just needed some discipline, would just grow out of it, etc, and his own head refusing to admit that his son, his only son, his name-sake, his pride and joy could be anything other than 100% "normal." Any time I broached the subject he immediately grew defensive and angry, claiming I wanted something to be wrong with my child. His words were obviously false and very hurtful, but I couldn't let it go. I finally got him to agree that if he wasn't speaking by the time he turned two we would call Early Intervention to have him evaluated for his speech delay.
The day came that G turned two-years-old and we didn't call. As was the usual, we'd set an ultimatum and he'd juuuuuuuuuuuuuuust squeak close to the bar we'd set so we'd hold off. In this instance, he expanded his vocabulary from "Ma" and "Da" to include "Ch-" for 'cheese,' "Beh-" for 'bread,' "Psssss" for 'please,' and a weird "-nk" clicking sound in the back of his throat for 'thanks.' So October passed and so did November. Between our little one born in September and G I got little sleep at night, no naps during the day, and when December rolled around I was empty. I had nothing left to give. I fell into a very dark, depressed state. I felt horrible. I thought I was an awful mother, a terrible wife, and a miserable person altogether. One night was particularly terrible for G's night terrors, the baby was breastfeeding almost non-stop because of her 12-week growth-spurt, and my husband was, of course, at work. As G was screaming for the third hour I was in tears and hysterical. I grabbed his little shoulders and screamed in his face, "WHAT DO I DO? I DON'T KNOW WHAT TO DO! I CAN'T DO THIS ANYMORE! DO YOU HEAR ME? WAKE UP! I CAN'T DO IT ANYMORE!" He was, of course, sound asleep despite his night terror and seemed unphased by my outburst, but I collapsed beside his bed sobbing in horror at what I'd just done.
When we all got up for the day that morning, I immediately called my friend Danielle. She was my one local friend, and she just happened to have two kids with SPD, one of which was also autistic. I had met her two years prior on an international cloth diapering forum online and we had often discussed the similarities between her sensory/autistic kid/s and my son. When my husband just happened to get a job offer across the state and we moved twenty minutes from her house, we quickly formed a close friendship and started having our very own "sensory playdates" where our kids who might be looked down on for their behavior elsewhere were free to play together in their own way with understanding parents and siblings. She was put in my life for a reason and by a Higher Power. Truly, she's been my sanity more than once.
So back to that phone call. She said in her usual upbeat voice, "Hi! How are you?" I melted into tears, described my night and told her I couldn't do it anymore. I asked her about Early Intervention in our county and how I could reach them. She answered every question I had, gave me so much comfort and advice. When my husband came home from work I simply told him I needed him to watch the kids before he went to bed because I was calling EI right that moment and needed quiet. He just nodded okay. I think that was a turning point in our lives.

"I Messed Up the Game"

This morning I was cleaning the kitchen when my son came to me looking very concerned. "Mama," he said, "I messed up the game."
"What's that, Bubby?" I inquired.
"I just messed up the game," He replied with a tone that said, 'DUH!' I crouched down so I was on eye-level with him and asked what game he had messed up.
"The game. The whole fing. I messeded it up. I was just a baby and I messeded up the whole game and eve'yone was f'ust'ated wiv me."
I still had no idea what he was talking about, but I went with it. I told him it was alright, no one was frustrated. I reminded him that babies are just SO little and they don't understand how games work so I was sure that it was okay if he messed up a game when he was a baby. No one was frustrated with him. He gave me an exasperated sigh and walked away grumbling.
I really do not know what he was talking about, but it did make me think. How often in our benign conversations have my husband and I discussed our frustrations and remembering what a "hard" baby he was? How often have we mentioned that if we knew the next baby wouldn't have the struggles G has that a fourth child wouldn't be such a bad idea? We've never done it with intention of making G feel badly, nor with regret or frustration over having him, nor blaming him for anything, but how often has he listened to us when we haven't realized it? He's always off in his own little world so we tend to take for granted that he's NOT listening to our conversations regardless of the topic. How often have I discussed his struggles from the day he was born with his therapists over the last year, assuming he's distracted with his activities? Have I really conveyed to him the message that he somehow messed things up as a baby? It's been hard, yes, but he did not mess up a single thing. He's just showing us a new way to live- A way where he follows his own path and his own rules, and I am SO thankful to be his Mama who gets to hold his hand-- well, okay, let's be honest, it's more like running as fast as I can down this path to catch him when he needs help. It's hard, but I would not give up this work-out for the world.