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.