Sunday, April 29, 2012

THAT Moment

We knew it was going to be a rough morning at church before we were even out the door. It was 34 degrees outside and he didn't want to wear THAT jacket, but considering the temps this was not a choice. So he screamed. Two minutes into our 15-minute drive to church his cries when from the repeated, "I DON'T WANT THIS JACKET!!!!!" to him clawing at his eyes and screaming, "THE SUN IS SO BRIGHT! SO BRIGHT! IT HURTS ME!" Shoot. We forgot both of his pairs of sunglasses at home. My husband gave me his sunglasses to give to G in the back seat. He quickly put them on, then put his hands over the sunglasses and whimpered the rest of the drive that he could still see the sun and it was ouchie.
We arrived at church and did our exact same routine- signed the kids in through the secure system, printed stickers to put on their backs, then Hubby took Princess to her elementary class and I took Baby with me to take G-man to his preschool class. He ran in the room, then stopped short, looked around, and ran straight back to me. The teacher welcomed him, but it was a volunteer he doesn't see often. "Mama, I'm goin' with you today." I told him that was fine, I waved good-bye to the teacher(who gave me an odd look :-P ), and we went to the sanctuary. We were late(usually we are early) so there was a crowd of late-comers around us hurrying to the same place, and G froze. He grabbed my hand, started to shake and said, "Never mind. I want my classroom." So around we turned and went back to the children's wing to his classroom. This time the head teacher was there, and Miss S knows him well. She opened the gate across the door, slowly beckoned him in and asked me how his morning was. "Rough," I said. She smiled and said she'd page us if they needed us, and gently prodded G over the thresh hold so she could close the gate. 
The service went smoothly, no pages, and G was even sitting silently on the outskirts of the group for various activities when Hubby peaked in on him several times, rather than staying under his usual table in the corner with a toy. We were walking down the corridor toward the doors, and G was "racing" me, by running a few feet ahead so he was 'faster' then running right back, to ensure he was always close. He did this the entire way, and as we stepped out into the parking lot a sweet man behind us said with a chuckle, "My goodness, buddy, you have had TOO MUCH coffee this morning." G immediately froze, stared the man down and bellowed so loud it shocked everyone around us, "STOP TALKING TO ME!" The man, obviously embarrassed but good-humored said, "Stop, huh? Okay," and laughed as he walked past us out into the parking lot. I was beside him the whole time repeating to him, "G, relax. It's okay. You're safe. He's just being friendly, he doesn't know," but the fact that he had said anything further sent G-man into a tizzy and he began sobbing and screaming after the man, "I'M SO MAD AT YOU! SO MAD! YOU MADE ME VERY ANGRY!" Every one around us gave us the familiar range between clucks of disdain and chuckles as they scurried away. 
I wish I knew how to better deal with those situations. On the days G seems to just wake up in a tizzy, we generally try to stay home, but our entire family has been struggling because of it. From November through March we made it to church on average once a month. We feel like church is a safe place, and once a week shouldn't be too much to push him. It's the same room, the same kids, the same routine, the same snack, the same time. Every week. So for the month of April we've been going every week regardless of how G wakes up. One week he was kicked out because a little girl came over and slapped him completely unprovoked, and he flew into a rage, pouncing on her until a teacher pulled him off. Last week he spent much of the time under his table in the corner, and the teacher said he was completely unfocused and off in his own little world even at snack time. Today he did well in class, but had this eruption afterward. We take every day as it comes and try to stay one step ahead, but his brain decides how it will be each day, and it's entirely different all the time, so there's no way to get ahead. 
I am trying to figure out where the problem ends and where the excuses start. Like when G has an outburst that is loud, noticeable, and as he's getting older- seemingly inexcusably rude. How do I explain that to those around us without spending 15 minutes talking about sensory issues? I don't want to be the mom who makes excuses for her child, I want to be the mom who teaches him how to overcome the struggles he faces in the often hostile world around him. I cannot fathom throwing out a comment like, "Pardon us, please. He has special needs," to strangers, because that will teach HIM to eventually use that as an excuse, too. I just don't know how to sort that out. I felt like that jovial man in  the parking lot deserved an apology, and yet I was trying to tell G he was doing a good job using his words to express himself, but he needed to relax. I'm so stuck in this spot right now. 

Sunday, March 25, 2012

Private Thoughts

This is a copy and paste from my private journal the day of G's eval after everyone was in bed and the hubby and I had discussed long and hard the situation:

 I think the moment we as moms pee on the stick and watch the + show up, our brains begin to spin. We think boy or girl. We hope for a safe pregnancy. We think about who to tell and when. We think about names. We think about the future of the tiny being that we now know is growing in our womb, whether we can tell or not. Will he be an astronaut? Will she be the first female president? Who will he look like? What will she sound like? Very rarely does, "Will he be healthy? Will she be retarded?" Enter our minds. My pregnancy with our youngest and the threat of an abnormality "incompatible with life," has taught me to never take for granted a healthy pregnancy. Watching my amazing nephew A for the last almost-four years has taught me to never take my children's health for granted.

We've known for a while that things with G weren't quite right, but I never thought to call him "special needs," mostly because of my nephew. A has special needs. REALLY special needs. We know he's smart. We know he wants to do so much more than the evil Alpers' Disease allows him. We can see it in his eyes. Some days are better than others, but most of the time, even though he hasn't been able to make eye contact or turn his head and look at me for quite some time, when I walk into his bedroom and say, "Hi, my Andykins!" His lips twitch in his unmistakeable attempt at a smile. See? He not only remembers my voice, but also the snuggles, foot rubs, and fun with the whoopy cushion that accompany my voice. 
That said, I have realized that I feel some measure of guilt saying that G is "special needs," because I feel like I am then putting our struggles on the same level as my nephew and his family. Like the days, even weeks, of our household at a stand-still because of G's constant tantrums, self-injurious fits of rage, sleepless nights, refusal to eat and vomiting whenever anything is put in his mouth could ever be compared to sitting beside your son day and night, watching him struggle to breath or lift his head. After his doctor's appointment yesterday and today's core evaluation with Early Intervention, it's been confirmed- G has Sensory Processing Disorder. He is now going to be getting treatment for it every other day. My son has officially been labeled. He is officially "special needs." At his appointment yesterday, I spent nearly an hour talking to the doctor about his "quirks," then as much as he would allow, she probed G for things a doctor's eye is trained to see. I am thankful that our pediatrician happens to be the one with another SPD patient, and because of that, she has done a lot of medical research on the disorder. The team spent an hour and a half playing with him, doing tasks with him to test abilities, watching him attempt to eat (or throw ) different textured foods, and asking Josh and I a ton of questions. The collective "expert" opinions over the last two days: My mommy intuition was right. G is cognitively very advanced. He is able to express that he knows things very few 26-month-olds know, but his neurological dysfunction affects the way he receives, processes and expresses stimuli. His brain also functions differently from day-to-day, so while one day he may act like a perfectly "normal" two-year-old, and the next day his brain decides that every stimuli, from food in his mouth, sound waves in his ear, to a touch of his skin is overwhelming and painful. In short- he's a smart cookie, but his brain doesn't work like most people's, and it affects pretty much every aspect of his little body. After all, the skin is a HUGE sensory receptor, and it covers nearly every inch of the body.
On the bright side, I still have my hopes and dreams for my son, and I will never take that for granted. More and more is being discovered about SPD, which expands the ability to treat it. Treatment is therapy, learning coping skills, building muscles, teaching the brain to respond differently than it automatically would by desensitizing it to stimuli. On the one hand, I feel like this is "just" SPD. On the other hand (mostly the one that deals with the really bad days), I wonder if Gabe will live a miserable life because he is filled with rage, confusion, and discomfort because his brain won't work right.
I just continue to pray, thankful that my son is alive, that he is physically healthy, and know that he'll be the first president with SPD. 

THE Evaluation

January 4th we had a full check-up for my boy. Head-to-toe with his pediatrician to rule out anything medical that could in any way explain G's struggles. She had to slowly-slowly move across the room toward him while she and I chatted and ignored the little elephant in the room. She couldn't speak to him or make eye contact or he would squawk, cover his face and hide behind me. When she was finally able to get close enough, she continued to talk to me, pretending to ignore him, but handing him each tool she would be using(stethoscope, otoscope, tongue depressor, etc) to inspect, play with, and decide he wasn't afraid of before she could use it on him. In the end she declared him the picture of health, in the 50th percentile for height and 95th for weight. The next day, however, was the day I'd been dreading and yearning for all at the same time: His EI evaluation. One part of me was praying he was having a low-down, no-good, terrible day so the core of evaluators could see him at his worst and know what we're really dealing with. On the other hand- who wants to hope their kid is having an awful day?! Me, that's who. I had been told by so many that he was 'just a boy' and a myriad of other bull-crap that I was beginning to doubt my intuitions. Maybe it WAS just my inability to parent a spirited boy. Maybe it WAS my failure. Maybe the evaluators would come tomorrow and tell me to quit being paranoid and MAKING my kid seem to have problems like my husband often did. 
The day came, and G was having a good day. A GREAT day, even. The team of evaluators arrived a little before dinner time, and he settled right in. Five strange women sat in a circle around him on the living room floor and he was completely unphased. They gave him toys to play with, interacted with him, tested him in various ways, and he charmed them all. All five evaluators stayed longer than they even needed to simply because they were having fun with him(so they claimed- LOL).
Once they were finished, we sent G upstairs to play with his sisters and the evaluators went over his scores with us. Both my husband and I sighed heavily(though for different reasons) when they explained the numbers to us: He more than qualified for services- Occupational Therapy, specifically. He also qualified for Speech Therapy, but they believed his verbal issues were due to oral muscular and sensory issues and that OT would help that. They told us we'd be getting a call from our service coordinator in the following days and learn how things would proceed from there.
I was relieved. SO relieved. It wasn't me being a failure. It wasn't that I was a bad mom, incapable of raising a boy. It wasn't the dark cave of Post Partum Depression I'd been struggling with since the day G was born stealing me away from my child. Best of all: HELP WAS ON THE WAY! It could still be weeks, but it was coming and before long there was bound to be improvement and other resources. 
My husband struggled. For him it was not relief, but rather a confirmation that his only son, his name sake, was defective- labeled as "Special Needs." I struggled with that from time to time as well, but the relief of help  for improvement and hope for the future often chased away the fears. 

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.