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.