Thursday, August 28, 2014

School Challenges

It's been months since I've written. We've been busy, learning, growing, and I've been writing about our adventures of all sorts on my main page, Creating Essence.
First day of kindergarten! 
One of our new adventures has been school. This year we started full time school. July 2013 G stopped receiving services for his SPD, and in August 2013 we started his kindergarten homeschooling. Most days were okay and we accomplished adequate schoolwork. Many days were rough and I tried to get him into some kind of school work purely as a matter of keeping the routine, regardless of what we accomplished. I know my guy and I know how he works, so when he was having a good day we just did as much as he wanted as fast as he wanted until he decided he was done. I was initially worried he would have regressions, because that's been his life-long pattern. Whenever his body was doing something new, whether developmentally, physically, etc, his brain would pick it up quickly, but for the first couple weeks there would be regressions in other areas while his brain seemed to 'compensate' and deal with the assimilation of that new information. I was fully prepared for spirals of madness and many tears. Thankfully this was not the case with learning. By going at his day-to-day pace, accommodating the environment and work for his needs, we were able to stay perfectly caught-up with his work year-round, to the point that we were ahead and by February he was reading very proficiently and was beginning first grade schoolwork.
This summer officially marked one year without any therapies or services of any kind for our guy, and he's doing very well. He still has bad days, weeks-long spirals of difficulty, and night terrors, but they're not as frequent, not as intense, and he is maturing which helps a lot. In October G will be six, and despite his challenges he is wise beyond his years. He has begun to understand without me, my husband, or anyone saying anything that he has struggles. He's realizing there are things others can do and even enjoy that make him miserable and send his world spinning out of control. Thankfully he has also learned to verbalize these feelings most of the time, even if he doesn't quite know what is going on or what to do with his feelings, he can tell us that he's feeling them so we can help explain and give him coping strategies. I'm in awe of the progress he has made.
Coming up on first grade this year, I was admittedly worried. Despite the success of kindergarten, I was worried that the more structured and necessary sit-down work time that would be longer than the previous year he might struggle. On the contrary, he has been doing twice, sometimes three times the amount of necessary work in each subject because I'll step away to help a sibling with an assignment and because of his advanced reading skills he reads the instructions himself and just keeps going. Again, I was worried that with the increased workload he might struggle with the regressions I feared would happen in kindergarten. Thankfully, we're 4 weeks in to the new school year and we have not dealt with any regressions.
The one thing we have dealt with has been the occasional bad day. Just like the previous year, we stick it
out but with a much lighter workload, I walk him through every bit of his shortened assignments purely for the sake of keeping his daily routine that help give him a sense of grounding and predictability that is especially important on those rough days. On those days I also have a new tool this year: essential oils. I have used EOs around the home for many years, but this past year I began studying them extensively, and was delighted to discover a handful that have been shown time and again through a multitude anecdotal evidence to be very effective in helping those with ASD, ADD, ADHD, SPD and more in a variety of ways. The two we use on rough school days are Cedarwood and a blend called Clarity. I've learned that when G is having a rough day processing his schoolwork, there's a certain way he writes- or has trouble writing, rather- during his very first subject. The struggle writing his numbers is usually accompanied by tears of frustrations, exclamations of his brain not working right, and not being able to make it do the schoolwork, and if he gets too upset he begins physically assaulting his head in an attempt to "make my brain work." At whatever stage I recognize the onset of a bad day, I stop his work, give him a glass of cold water to drink(hydration helps everything, I say. :-) ), put two drops of each oil in one palm, mix it with my index finger, then use that same finger to rub the oil into each temple, along the mastoid bone curving behind each ear, then use what's left in my palm to rub down the back of his neck, and give him a ten-minute break to do whatever he chooses. After his breather, we sit back down and work together through his work. The struggle isn't dissolved, but there is always a marked difference, and with some instructional scaffolding from me he can get through his entire workload for the day without significant issue. Some days, though, before his break his over he asks for a nap. To me, this is a good thing. It means he has been able to calm down enough and his brain can regulate enough that he can feel tired and KNOW he needs some rest. Pretty much anyone with a sensory kid can tell you that sleep can be hard to come by especially on bad days, and the goal of goals for their child is that they be able to both recognize and verbalize what he is feeling and what he needs in those difficult times. This never happened before using the oils. For that and all the reasons listed above, I am incredibly grateful for these new tools I've discovered.

Want to know more about these essential oil things? Check out my informational post them on my main page: Creating Essence

Sunday, June 29, 2014

Little Victories are Huge

This past week, we stepped outside of our box. Our G loves playing soccer in the backyard as a family, so we signed him and his big sister up for soccer clinic. It's two hours once a week for five weeks, sponsored by the local professional soccer team, held at our church so it's a familiar environment, and the kids are from our church so while we have four services, he would have likely crossed paths with many of the other kids and parent volunteers. We felt like this was a step we could confidently take to help him stretch his wings a little. The morning of the first day of "camp" I was nervous. I was anxiety-ridden FOR him, but made sure to keep my feelings to myself, and took every opportunity he gave me to tell him how FUN it was going to be, what things they would likely do, and how things probably work. He is so excited all day. I was cautiously optimistic, hoping for the best but preparing for the worst. Social situations are terrifying for him, the unknown is panic-inducing, but he has learned that his Mama, Daddy, and big sister will not let anything happen to him, and will help him when he's struggling, so when he has at least one of us he feels perfectly safe. Then at dinner we remembered his three little guy-buddies from church were out of town on vacation and were missing this first night of soccer. Then his sister reminded him that since she's a girl and 2 years older than him, she would probably be in a different group. He became a bit nervous after that, but kept reassuring himself and saying, "We'll see. They always let me stay with you in Sunday school. We'll see." I was proud of him for having the presence of mind to try and rationalize that could all be okay. That's huge.
   His calm was short-lived. The first half of soccer clinic was a disaster, with me- 3-year-old in-tow and 1-year-old in the Ergo on my back- running drills with 5- and 6-year-old boys while dragging a sobbing G by the hand. The coaches and parent volunteers at every station were rockstars just playing along with it and allowing me to do whatever I needed to. I got the vibe with every knowing smile, nod, and supportive comment that they thought he was Autistic. I didn't care. Like my sister agreed when I talked to her about it later: If Autism awareness helps the greater public GET that some kids are struggling deeply inside and not just naughty or bratty, then don't bother correcting them. Just be thankful that they're supportive of my guy regardless of semantics.
   By the end of the night, he was unsure, but willingly participating. That's huge. He was sobbing every time he made a mistakes or got "out" in that round of Sharks and Minnows, but he was going back in on the net round and trying again. That's huge. Sure, his body decided it was too stressed so sweating was optional so he got a screaming headache, spiked a fever of 104, and passed out(literally) in the van on the way home(we think now it was heat stroke. He's fine now.), but every day since then he has said he is excited for next Wednesday and the next soccer clinic. I'm torn inside. I'm dreading the physical and emotional exhaustion it was for BOTH of us to deal with it, but excited for him to have the opportunity to try again. To again see that it's a safe place that is both challenging and fun. To try allowing others to look at him and not panic, and to try looking people in the eye and telling them his name when they ask instead of running to me crying. I'm also going to be prepared with more water bottles, and a new Frogg Toggs cooling towel to put around his neck and over his chest under his shirt. Contemplating cutting a piece of it to make a headband, too. I'm just too crafty and cheap like that than to buy the actual headband they make. ;-) 

Sunday, May 4, 2014

The Trouble with Socializing

I don't write here often enough. Every time I think, "Gosh, this would make such a great blog topic," the time to write isn't available, and when the time is there the moment has evaporated from my mind. At this moment, my tiniest guy is napping and I am enjoying a cup of afternoon espresso, so I'm making myself stop and write on an issue we just dealt with.
   One of my last posts(which, sadly, was almost exactly 2 years ago) was about trying to figure out the balance between apologizing for G's seemingly inappropriate behaviors in public while encouraging him in his progress in social settings. In the end we just always went to apologetic smiles to on-lookers and taking care of our guy's needs in the moment because lets face it- the feelings/impressions/misunderstandings of a random adult should pretty much ALWAYS come second to the needs of my kids. Now, at almost six years old, we've reached a new stage of the social scene. A stage where our gift is becoming painfully aware that he is incapable of handling social situations as he is both required as a matter of family rule and expected as a member of society to. It devastates him, and it breaks my heart.
   For example, Sunday school. We just moved half-way across the country five months ago, and started going to an incredible church which a large rotation of carefully screened volunteer Sunday School teachers, but most are lacking in any training for dealing with special needs. Most of them are like me(I teach in the preschool class), parents wanting to give back and help out in appreciation for the children's ministry that cares for our kids. But unlike me, most don't have backgrounds in education, special education, or even parenting special needs. Amazingly, though, they have without exception been incredible with our guy with little to no explanation that he may need some accommodation, or he may have seemingly random outbursts that are really, really significant to him, and sometimes just that he may seem defiant or disobedient purely because he's terrified and his default is to freeze and withdraw. One Sunday the kids told us in the car on the way home that he was allowed to go with his big sister(in an older section of the same class) for an activity, and I casually said how nice that was of the teachers. A week or so later I was chatting with a mom who occasionally volunteers and she mentioned she had been helping out one week when they'd split the kids into age groups. When they asked the 2nd graders(Big Sister's age) to go to a different activity, she noticed G's face immediately crumple into panic when he realized he as a kindergartner would be without his Big Sister so she stepped in and sent him along with the bigger kids. That touched my mama-heart so much, I got a bit teary about it. For the most part, he can handle social situations, but he needs to feel safe, and when they're in the big class room with lots of kids and different teachers every week, his big sister's presence gives him that.
   Then there are days like today, when despite his security blanket of family and accommodation, he realizes  that he struggles. We were discussing their lesson after lunch, and he mentioned having stepped on some one's leg. I said, "Oh no, did you say you were sorry and ask if they were okay?" His face dropped in shame and he turned red. His sister filled in the rest. "Actually, he stepped on two girls' legs, and no, he didn't apologize," she said, "He hid and wouldn't talk." I reminded him of our family rules- that when we hurt some one, no matter if by accident or on purpose, we apologize and ask if they're okay. He ran away sobbing. After giving him some alone time to calm down, I went to his "hideout"(aka the bottom of the pantry cupboard), sat on the floor outside the door and had a talk. He was able to verbalize to me that he was mad at himself because he doesn't like hurting people. I told him I understood but that's one reason why we need to apologize and make sure people are okay- so they know we're kind and didn't mean it. He began to cry again, gouging at his eyes with his fingers and slapping himself in the face. Through his tears he told me that he had tried to apologize because he wanted to, but the words wouldn't come out. They were choking him in his throat and wouldn't come in his mouth because he couldn't breathe. He said the choking made him angry because he WANTED to be a kind boy but his body wouldn't work. Pretty profound description of panic coming from a five-year-old. Oh, how my heart broke for my boy.

Saturday, November 2, 2013

How Does it Feel?

Sensory kids experience pure torture when they're sick. Being a sensational being myself, I can sympathize with my Gift SO much. Most people, however, cannot. Allergies are the pits, aren't they? Or a cold, upper respiratory or sinus infection- that pressure, headache, congestion, discomfort from boogers, the uncontrollable coughing, phlegm, post-nasal drip. Miserable, huh? Think about how much you HATE stomach bugs- the nausea, the putrid tastes and smells, the horrible out-of-control feelings and physical strain with vomiting. Awful, awful stuff, right?
   Now imagine that every single thing you feel is exponentially more intense and you physiologically lack impulse control. Tune in to the nuances of your symptoms and turn those up, too.

The slight ache you might feel in the roof of your mouth from sinus pressure is suddenly so intense you cannot fathom eating and you literally claw at your mouth trying to pull out your teeth because of the pain and pressure in your palate.

Hour-long panic attack at 1am over post-nasal drip
Post nasal drip that usually might make you cough and your throat scratchy suddenly makes you feel like you're drowning in thick phlegm and you're gasping for air, which makes you cough and literally choke on the post-nasal gunk.

Nasal congestion that might make you keep a box of tissues handy for frequent blowing instead adds to your
feeling of inability to breath. That ticklish sensation some get from a runny nose on the tiny hairs of the mucous membrane? Imagine they're vibrating with such force you rip at your nose trying to tear it from your face because that seems to be the only option for relief.

Consider the tightness and dull ache your chest may feel when a cough has set in, and the sharp pains you feel from a coughing jag. Again, multiply it exponentially and imagine the immense pain, and such intense tightness that you feel as if you're drowning in your own lungs.

The physical discomfort from all of that is intense, to say the least, and the addition of learned anxiety from having to cope with a seemingly hostile world full of painful stimuli makes for a literal living nightmare. Panic-inducing, is what it is. When you take your child out despite the runny nose 'it's nothing, really' is a week-long nightmare for a sensory kid who gets your germs, not just a stop at the grocery for Kleenex. Sensory issues are not a joke, an excuse for a misbehaving child or bad parenting. It is a legitimate neurological issue that affects every single sense in every way.

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.

Thursday, December 22, 2011

The Dreaded Sleep

When G was a year-and-a-half old my husband got a job across the state, so we packed up and moved. The kids seemed to go with the flow quite smoothly- MUCH easier than we had expected.
Then bed time happened. My sweet son would slowly progress from sleeping soundly into moans and thrashing, then hit the peak of screaming, flailing and hysterics. For hours. He never opened his eyes, just screamed. And screamed. And flailed and screamed. Stiffened and wretched. We couldn't wake him. We tried shaking, snuggling, rocking, yelling, whispering, singing, television, cold water- you name it, we tried it in an attempt to wake him from these hours-long fits. Nothing worked, and my husband worked nights so five nights of the week I was alone to deal with it. I would hold him, often restraining him because otherwise he'd be unconsciously bashing his body and limbs on the wall, the dresser, his bed rails, etc. I would just hold him, praying aloud for peace and comfort for my suffering son, and for strength and grace for myself. I would often get to the limit of myself and just sob, begging my son to tell Mama what was wrong, tell Mama how to help, what to do- anything, I would do it to help my baby boy. Eventually he would just slowly come down from the hysteria and seem to slip back into peaceful sleep.
While the night terrors were worrying and tiring, so were the other nights when his insomnia took over. I suppose insomnia is the wrong word for it, because he did go to sleep initially, though he was restless and thrashed around for an hour or more before sleep claimed him. Inevitably, however, I would wake up at some point during the "good" nights because I would think there was a prowler in the house. While we were never burglarized, we did have a prowler in the house- a toddler who silently meandered through the rooms, pacifier in his mouth, just playing in the silence. We could not gate him into his room because his sister needed to have access to the toilet, but we quickly learned to put a gate across the top of the stairs. Without it, he would go downstairs, open the fridge and cupboards and make a mess, get into any and every thing, climbing on counters, table, shelves, knocking things over, pouring things out, and sometimes just get lost in the darkness and begin screaming in fright.
During that summer my sister, brother-in-law and niece stayed with us for several weeks while my nephew was in the PICU at a nearby hospital. One night we went to bed late and forgot to put the gate up, and he meandered down to the living room where my sister and her family were asleep on air mattresses. The fright and subsequent screams from both parties woke the whole house up in confusion.
Once we began gating the stairs, we would often wake up to G playing in his room, our bedroom, or one of his favorite places- the closets. He seemed to love packing himself in the small spaces amongst boxes, towels, blankets, shoes, what-have-you, and just sitting silently in the darkness playing with hangers, random objects, a toy, or his hands. I woke with a start every time, my sleepy mind thinking some one had broken in and was rummaging through our home, despite the fact that my conscious mind knew it was just him. We learned to meticulously G-proof the upstairs- which was harder than baby-proofing, because he was bigger, smarter, stronger, and more clever than a baby, though more inquisitive and mischievous, too. Whenever I was awakened by his late-night play, I had no way of knowing how long he'd been awake and he was not able to tell me, because his vocabulary still consisted of, "Ma" and "Da."
Between the screaming fits and the late night play, I felt like I never slept because he only every slept during the day. He was an EXCELLENT napper- 3 or 4 hours after lunch time every day, like clockwork. When I'd try cutting back on the nap time in an effort to improve the night time, it was always disastrous. The boy did not take kindly to being awakened, and when I say that I do not mean simply grumpiness. I mean difficult to wake from his seemingly coma-like state, and when we did manage to wake him, he would scream inconsolably for hours. No, that's not an exaggeration- hours. It often lasted until bed time and later because he was so distraught on top of his usual restlessness and inability to settle into bed at night.
When I'd mention it to anyone else I often got the feeling they didn't believe me, or they thought I was exaggerating. Everyone, that is, but my mom. Whenever I'd mention G's sleep-time quirks to her, she'd just give me a reflective and almost puzzled look and say, "Wow. That sounds exactly like you as a child." That was the first of many times she would say that to me, making a connection between G's quirks by describing to me my own tumultuous and maddening "quirks" as a child.