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. 

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.

The Dreaded 'A' Word

At his one year check-up the nurse practitioner listened to our concerns regarding G's lack of speech and many-many quirks. Her immediate response: "Well, let's have him screened for Autism." I was stopped short. In my years of teaching preschool, as well as the internships and student teaching I'd done in many types of classrooms and environments during college I had worked with MANY truly autistic children. My son was not autistic. Her reasoning for wanting the screening done: his lack of speech. Really? Just straight to Autism- no speech evaluation with Early Intervention or anything of the sort? Research told me this was the fast emerging trend of pediatrics.
While I truly believe there are those with true Autism, in my honest opinion it is a fad diagnosis. Just as Attention Deficit Disorder and Attention Deficit Hyperactive Disorder were when I was growing up, it seems every child that is not society's idea of "normal" is being slapped into the Autism Spectrum. Not only is this a mockery of those who truly deal with Autism, but it is a disservice to our children and their futures. We're telling our kids, "You're not perfectly normal, so here- you have this disorder." Disorder. Just the word is enough to make a little kid feel further alienated from his or her peers.
The nurse practitioner seemed totally baffled when both my husband and I immediately declined the Autism screening. We knew our son and we knew something was wrong in his tiny mind, but it wasn't Autism.

The Trouble with Cake

Baby's first birthday!

Despite the fact that everything of the non-edible variety went in his mouth, G was intensely selective on what food he would actually eat. I heard time and time again, "Oh, he's just a picky eater," and "You cannot ALLOW him to be picky. Make him eat what you serve and that will nip it in the butt right away." Yeah, uh, that did not work. We would present whatever we were eating in baby-friendly size pieces and portions and put it in front of him. Some things he would gobble with gusto, stuffing his mouth full with so much he had to cover his mouth with his hands to hold it all in. As a result my husband and I became very adept at the finger-sweep to clear out the bolus of food he would create and choke on, but no matter what we did we couldn't get him to take smaller bites. If we rationed his bites and gave him only one at a time he would literally swallow it whole no matter what it was. Whole. No chewing. Just swallow. It was bizarre, but once again friends, family, and even doctors just said he must have a hearty appetite, he was clearly a big boy, and was just really hungry come meal time since he weaned himself from breastfeeding the week of his first birthday. We just added it to his growing list of what we called "quirks."

Cut off the messy frosting and cake is AMAZING!

   The things G wouldn't eat, however, was FAR longer than the list of what he would. At every meal we would make him eat one bite of each thing offered. A solid 7/8's of what we gave him he rejected with the involuntary heaves, gags, and hysterical screams until they fell off his tongue without a chew. Meal time became synonymous with G screaming unless we were having one of the three following: bread, pasta, or cheese. His mouth violently rejected most vegetables and fruits, especially leafy greens. They seemed to be the worst. It got to the point where ANYTHING green on his plate led to screams of terror. He wouldn't even touch them with his fingers to remove them from his plate.
   During these adventures in 'picky eating' we also discovered two odd contrasts: His hands could not be dirty, but his face always was. If he even had one thing that was sticky or gooey at all stick to his hands or fingers, he would erupt into screams again, flailing his little appendages in panic until he had flung it free or we had wiped them clean.
   At the same time, his face and shirt were always filthy. Always. It was like his hands were hyper-sensitive and his face had no feeling to the same goo. Should we try to clean up his face or shirt, he would scream like we were shoving chopsticks under his fingernails, where as cleaning his hands was rescuing him from torture. Another addition to the list of "quirks."

  

Sound and Movement

Once the binky came into his life, G was a new baby. I think we should have bought stock in Gerber, though, because we bought so many of the NUK pacifiers we could have paid the CEO's salary ourselves. We never wanted to be without one because of how much it soothed our little man, and because they went EVERYWHERE with us, we were always losing them.

   I was often told I needed to take his pacifier away so he would start talking, but I didn't care. He made enough noise in the first five months of his life that I was okay with a minor speech delay(if indeed the pacifier would cause that) if it meant a happier boy and more peaceful home.
   At about 9 months, G decided he could break away from Mama every now and then, and he wanted to move. He, of course, would not be doing it in the conventional style. Instead he chose his own style of Army crawl. He'd stretch his arms out in front of him, dig his fingers into the carpet and pull himself forward with his legs swimming out to the sides and only the tips of his toes helping to propel himself forward. As a former nanny I had worked with a child with significant gross motor delays and did her occupational therapy work with her daily to help her learn to crawl(at 18 months), so I tried a bit of that on my G. He would have NONE of it. He did it his own way and anyone who tried to intervene would get screamed at through clenched teeth gripping his binky, or screamed at and bit if his binky was absent. As always, my boy did it his way and his way only.

The first of many big boo-boos by clumsiness

   About the time he turned 11 months old, my boy stood one day and walked. He did it with such confidence you'd have thought he'd been walking around his crib for months while everyone else slept. He wasn't particularly graceful, but what new walker is? He had this graceful way about his steps, though, always seeming to be tipping forward with most of his weight on the balls of his feet and his tippy-toes. This fancy style of ballet-walking, however, meant A LOT of boo-boos. He was forever losing his balance and falling head-long into SOMETHING. One particular evening I had the night off and was doing some cleaning in the kitchen while my husband was working on homework in the living room when we heard a blood-curdling scream come from our bedroom. We both sprinted to the sound and found our little guy kneeling at the end of our bed with blood pouring from his mouth. A wet washcloth helped us briefly see inside his mouth and found that his two front teeth on the right side were pushed in and twisted, and a gouge of flesh had been taken from between the two. At that time our apartment was across the street from the hospital so I put the washcloth on G's chin, grabbed my wallet with the insurance cards inside into my husband's pocket and he ran out the door with the screaming baby. Our daughter and I quickly packed a diaper bag and shortly followed in the car. From what we could tell it seemed he'd walked into our bedroom and done one of his famous trip-and-face-plants into our bed frame mouth-first. Several hours, and a melted ice pop in the emergency department later, the doctors decided that stitches would probably be far more traumatizing than helpful, and his incessant binky-sucking habit would keep the saliva flowing and his wound clean.

Enjoying a hike from his tight and secure wrap

   Aside from crying and laughing, however, my boy never said much. He didn't coo or babble. As long as he was happy he just seemed content to sit back and watch with his enormous brown eyes everything and everyone around him, rarely interacting with any of it. Wore him on my back in some type of baby carrier all the time because he hated strangers. ANYONE unfamiliar approaching him would get what we came to call his 'stranger alarm'- a loud "EEEH!" that sounded much like a buzzer. If they stranger did not heed his sound and step back(and they often did not), he would erupt into screams of terror. As he grew older all it took was eye contact from a stranger across the room, across the produce display at the store, etc, and he would begin to scream. He just seemed to have this enormous bubble that no one dare enter or else.
   About this time(11 months old) G started some behaviors that were not necessarily odd, but the frequency with which he did them was frightening. One of his favorites was to bash his head against the nearest hard surface when he was in any way upset. We would cringe as he would have his fingers pushed away from the oven door and he would collapse in screams and begin repeatedly bashing his head on the ceramic tile floor. Other times he'd seek out the hardest surface, appliance or nearest wall to smash his head against at the slightest upset. Surely it had to hurt. Surely he wouldn't be spared serious damage simply because he was barely a year old and it was self-inflicted. Once again we received the same message from everyone, doctors included: It's normal. He's a boy so he's more aggressive in his tantrums.

In the Beginning

In October 2008 God gave my husband and me an incredible gift. This gift came in the form of a ten-and-a-half-pound baby boy. His labor started with one random contraction while I sat in church on my estimated due date and ended four hours later with one mighty push. As my midwife lifted this extraordinary gift out of the water of the birthing tub and laid him on my chest, he let out a mighty roar. He hasn't stopped roaring yet.
   It was clear to me early on that this gift was something special. He was never what we'd call a happy baby. He cried a lot. A LOT. Most nights he spent screaming, vomiting, and struggling to latch properly. Breastfeeding was adequate, but a struggle from day one. He just never seemed to be able to get it, and it was always painful for me. If I hadn't already breastfed one child for fifteen months I would have given up quickly, but I am as stubborn as they come so I stuck it out.
My incredible gift never wanted to be without touch- and firm touch at that. From the day he was born until he outgrew it, the only place he was quiet and content was wrapped up tight in my cotton interlock wrap. I wore this little man from sun up to sun set, taking him out only to nurse and change his diaper. Once we realized he had a serious dairy protein allergy and I eliminated the offenders from my diet his demeanor improved, but he by no stretch of the imagination became a "happy baby." He would scream for hours for no apparent reason, writhing and wailing in misery until he vomited in his distress.
   I was caring for this child the pediatricians called "high needs" and "colicky"(though he showed no signs of classic colic aside from inconsolable crying) as well as our 22-month-old daughter, and keeping the household in-tact on a shoestring budget while my husband worked nights and went to college full time during the day. We both slept hodge-podge hours when we could slip a few in, rarely seeing each other, and I felt like a house-bound single mother living on minimal child-support.
When my challenging little gift was about two weeks old I hit rock bottom one night. I remember like it was yesterday. I sat in bed in the tiny master bedroom of our country townhouse, holding this screaming, flailing little body and trying every trick I knew of to soothe, care for and comfort him as the hours ticked by. I remember looking at the clock and seeing it was nearly 5am. My husband would be home in an hour, my toddler would be waking up around the same time and I had yet to get to sleep. I broke down and began to sob with the baby. I held him against my chest as I shook and said aloud, "God, I did not ask for this. I was trying NOT to get pregnant. I didn't ask for this." As soon as the words crossed my lips I realized what I was saying. I cried even harder as I clutched my thrashing, screaming infant and begged God for forgiveness. This disconsolate child was mine- my gift, and despite the fact that these two weeks of his life outside of my womb had been filled with anguish, frustration, and misery, I would be lost without him. He was sensational.