I love your brain

To say this school year has been bumpy would be an understatement.

Our school is a wonderfully unique place. It’s a public charter school. The charter is inclusion. The student body strives to mirror the real world average ratio of typical students, gifted students (about 20%) and I.E.P. (Individual Education Plan) students (also about 20%). The I.E.P. students are those who have learning disabilities, behavioral disabilities or physical disabilities.

The children are all taught together in the same classroom(s) and there are no pullout services (i.e. kids who receive speech or physical therapy being removed from class to do so – therapies are integrated into the class). The classes are co-taught by a general education teacher who is supported by a special education teacher. Modifications are made to school and homework that challenge, or better access different students. Moreover, the children in our community are exposed to all different kinds of kids and quickly learn that despite sometimes obvious differences, they’re all more alike than not. Compassion and acceptance abound.

That said, it’s not an easy task to walk into a class with twenty something new students (yes, we have small class sizes too!) with various issues and have everything magically fall into place. It takes a lot of skill, patience, insight and dedication. It also requires adequate support of the special education teacher, collaboration with the families, as well as with the paraprofessionals who support the kids with needs. Successful school years are those where everyone is working together, communicating and supporting each other, as well as supporting the student.

Cole’s had great school years. He’s had ones that started bumpy before, like his fourth grade school year. He started school in full leg casts and a giant wheelchair that couldn’t fit near a desk or near his communication device due to a summer hip replacement surgery. He was miserable and disheartened that he couldn’t access things as he was accustomed to. On top of that, he had a brand new teacher. A teacher who did not yet have experience with kids like Cole and who at first seemed terrified. A month in, the casts came off. Cole returned to his usual chair and happily participated in class again. His teacher gained confidence, learned to access some of the more difficult kids, and quickly became one of the best teachers at the school. Definitely one of Cole’s favorites, and mine. Fourth grade ended up being a terrific year.

This year however has been slow to pick up. All of his teachers (in 7th grade you have six classes) are new to both our school, and a couple to teaching. There’s a great learning curve for all of them in general, coupled with the challenge of middle school kids.

Sadly none of seems to be working well and for the first time since he started pre-school, Cole routinely doesn’t want to go to school. This is a kid who formerly would tell you that he’d like to live at school. He used to be happy to get ready each morning, and was reluctant to go home at the end of the day. Now he wants nothing to do with it. We have a team meeting coming up where I hope we can make some strides toward improving things. One of the new teachers resigned last week, and a new permanent replacement will start after Thanksgiving. Perhaps fresh eyes on things will help with everything. This school is unlike anywhere else and I can’t imagine Cole thriving in a different environment. I have faith that things can improve.

There exists a contingent of people who are uncomfortable with others who are different and who are unable look past the differences or past their discomfort to be welcoming or kind. It always surprises me but I can accept that not everyone is going to embrace Cole, or take the time to get to know and understand him. I understand that it comes with the territory of being his mom. I’m not looking to change the world by using him as a lesson to others, especially not if it means putting him in the face of someone who has expressed unease about being around him.

Not everyone understands this desire to protect him from something that is somewhat unspoken. There are people I’m close to who seem to think it’s arbitrary but I know if they were ever to become aware that someone pointedly expressed discomfort at being around their own child or partner, they would likely feel the same way. It’s not the sort of thing one easily overlooks or ignores. It’s hurtful, both the ignorance of the people who have difficulty being around a child with disabilities and the lack of understanding or support from the others.

It rattles my soul that someone would pass judgment on a child, any child. It saddens me that anyone who cares about us would encourage us to put him in a position where he’s not entirely welcome.

Thankfully, it’s not something that comes up often. We are fortunate to have built a community of friends who embrace our little family. Cole has great friends who love him just as he is and he them. Over the years he’s managed to amass a great many fans. He’s endeared himself to the staff and patrons of many of our regular shopping haunts and eateries, and often finds new friends as we wander aisles. When he’s feeling especially outgoing, it’s hard not to want to stop and say Hello to him. To a large degree he is blessed to be a part of an extended community that welcomes him with open arms. For that I am thankful.

I’ve mentioned the chronic lack of sleep…Last night was no exception. Cole went to bed early because he’d been up since 3:45 am the night before which somehow translated to him waking at 2:15 am! Meaning I was up then too. Strangely when he wakes in the middle of the night, he’s not distressed like I am. He’s usually cheery and snuggly. He likes to spoon a little and chats a lot.

While I am happy to do the snuggling, it makes me sleepier, wanting to nod off. The chatting makes me grouchy. It interrupts the dozy feeling and removes me from the place where I can actually go back to sleep. Which is what he wants. He doesn’t actually want to be awake alone. He wants a cohort.

This morning I finally got him to go back to sleep for a little while around 6am…By that point I was awake so I just quietly read next to him enjoying the little snoring and especially the warmth of being next to him. More snuggles when did wake up and then a little morning TV in bed which has become one of his favorite weekend morning respites. He loves to watch a little quiet TV while snuggled up in the warm bed with the cat and dog snuggled up next to him. They all love it.

Sunday mornings are perfect for this, especially in cooler weather, and I love that Cole has finally grown to appreciate a good lazy Sunday morning. (He used to be antsy and need to get going from the second he woke up.)

During the week I long for these lazy Sunday mornings. Weekday mornings are a flurry of feeding, showering, dressing and rushing to get everyone ready and out of the house for school and work. There’s little time for distraction. We have a long weekend coming up with the Thanksgiving holiday and I’m looking forward to treating every day of that weekend like Sunday.

More and more I realize all of the nuances about my son that I don’t know. While I feel like I know him well on the one hand, the fact of the matter is that I only know what I perceive I know. It sounds mysterious when presented as such but the truth is that so much of him is just that, a mystery.

Since he was little we accepted his smile as an affirmation of approval or delight, and then gone with those acceptances. We’ve assumed his preferences by this scale since he was tiny. He’s always been adamant with his dislikes and no’s. He learned to say the word NO early on. It’s a simple word that he became very consistent with, although frequently his choice of expressing displeasure or dislike is the glorious whine. It’s the most effective and garners the most immediate reaction because “no one likes a whiner”.

Though lately I’ve been wondering if our interpretations are often too general. Because he whines in a store, we generally leave. Because he whines at a song, we switch to a different song. But are we interpreting the whine correctly? I’d say half the time we are probably correct. We do know him fairly well but other times like when he’s antsy at an event or waiting around or in an unfamiliar setting, the factors that are causing his behavior are so vast, and our solution is to often remove him from it when perhaps it’s just that he’s cold, or next to something that smells bad, or needs a jacket, or wants to move closer to the cute dog or girl, or just wants us to pay attention to him for a minute. But how do you know?

The layers of his personality seem so untouchable. I feel like we only touch the surface of what he things, feels, and wants. We manage his immediate and primary needs. We try our hardest to understand the depths of his being but at the end of the day, he’s an enigma.

It’s a strange understanding to love someone and to be fully devoted to making his every moment rich and fulfilled and to know that you may not ever be entirely successful in doing so, no matter how hard you try. It makes me wonder how much of his acceptance of things, and his willingness to go along with choices we make on his behalf is him showing us the same love and devotion and his understanding that sometimes we just don’t get it. We don’t always get him.

I hum…a lot. It’s actually a bit of a problem. There is always a song running through my head, sometimes even when I’m listening to an entirely different song. I hum to myself when I work, play, sleep and am occasionally caught humming when I eat. I don’t even know I do it. Sometimes it escalates to quiet singing out loud, like when I’m grocery shopping or grooving around Target. Music just seems to run through me, always.

There are times I think I hear Cole hum too. It’s hard to know for sure but I sometimes hear what sounds like a tune coming from him. I asked him about songs getting stuck in his head recently. He says they do and that sometimes he can’t shake a song even when he’s supposed to be paying attention in class…

Here’s a sampling of the new music we tried recently:

1. Taylor Swift – Shake it Off (he loves)
2. Griswolds – Beware The Dog
3. The Pixies – Head On
4. Banks – Beggin for Thread
5. Postal Service – Such Great Heights
6. REM – Can’t Get There
7. Lorde – Yellow Flicker Beat
8. Mehgan Trainor – All About That Base
9. Hozier – From Eden
10. Manchester Orchestra – Every Stone

I love to dance. While I’ve taken the random dance classes here and there, most of my dancing days and nights are the kind of dancing you do at parties and night clubs, dancing with abandon for hours and hours. I used to dance in my room and around the house, and even made up dances to entertain my parents and their friends when I was little. Dancing makes me happy and brings me joy. I think it’s what kept me in relatively great shape when I was in my teens and twenties. If I could dance, I was happy.

I went to clubs most nights and danced. Usually as part of a pack, we’d descend the dance floor, mark our space, and dance. Together, alone, sometimes with strangers. It didn’t much matter as long as the music was good. Punk rock, glam rock, new wave…definitely a product of late ‘70’s and early ‘80’s! Late I learned some salsa dancing and took a stab at swing and spent lots of nights at the King King where they had live ska and big band music, dancing.

I find now that I imagine dancing to songs when I drive and will even cop to doing some stationary dancing in my seat while driving…I find it hard to keep my body still when I hear music. I dance around the house with Cole or around Cole sometimes and when I’m alone I groove around the kitchen or bedroom while I’m getting dressed or cleaning. I haven’t been club dancing in ages.

A group of us forty something moms did go to a trendy club a couple of years ago and were treated to a night of fun in the VIP room of the club where upon realizing that we were among the oldest people there, and that we were not there to meet boys, and that we didn’t so much care about what other people thought, danced and danced and danced until we were hot and a sweaty and utterly gleeful.

This morning left my heart in pieces…

Cole and I have had a week of togetherness, with a few more days to go, whilst my husband is traveling on business. While I know he misses his dad terribly, he also relishes the time alone with me. He enjoys knowing that I’m the one who is solely responsible for him, mostly because when we are a threesome, his dad does more of the heavy lifting because he handles the driving to and from school, homework, often dinner, before I get home from work.

With him away, much of that falls to me, though I am blessed to have someone who can do the driving since I work in the complete opposite direction of his school. Otherwise, homework, dinner, bath, and all of the in between is me, and he loves having me at his beckon call. If I am to be honest, I love having the special time with him too.

I stopped working when he was born so I could devote my time and efforts to caring for him. We did a lot of early intervention therapies and started a co-op infant/toddler program when he was just a year old. When he started pre-school, we continued with therapies in the afternoons and I chauffeured him to and from school and therapies. It wasn’t until he started elementary school that I felt I could return to work and for the first couple of years it was consulting work so I had time to be on campus, and still was the main chauffer and homework helper.

Had things been different, my plan had to return to my career a couple of months following his birth, however life had a different plan for our family. In retrospect, having had so much time with him and the opportunity to be a full time mother was something I’d never trade. So now that I’m working full time and not the primary parent during the week, I cherish our little pockets of “mom & Cole” time. Even today when my heart broke…

He stayed home sick yesterday…He’s been stuffy and running a slight fever on and off for over a week. Despite a pretty restful weekend, he woke early and was just not himself so we both stayed home. He rested and I nurtured. So this morning he woke, happy and seemingly content. I ran around getting his gear ready for school, showered and got myself ready for work, and when it came time to get him dressed, he burst into tears. Tears that continued through dressing, transferring to the wheelchair, rolling outside to greet his ride, rolling into the van, and apparently all the way to the freeway. I know he’s well enough for school. I know he had good sleep. I know he will have a good day once he settles into it.

But I also know that he cried because he just wanted to spend another day with me…