Ho Ho Hum

For some reason I'm not feeling the holiday cheer. I generally enjoy the holiday festivities but this year I'm just not there. I'm not sad or blue...I'm simply not finding the glee right now. Maybe my mind is on overload between all of those damn responsibilities and things that have to be done leading up to the celebrations? Or perhaps the whole spirit of giving feels a bit lost...I just don't know. I'm just going through the motions of all of the prep.

I'm more looking forward to the new year beginning. This year has been a bit rough on us, as it has on too many. Comparatively, we're just fine. Our little trio can handle pretty much anything by now, as long as we keep "us" in tact, it's all okay.

Next year shows promise...Dan's making a movie, my work gig is steady, and Cole's happy. We plan to put in raised beds in our backyard for veggies and to do some updating to Cole's room (to make it more "boy" than toddler...). Having my hands in things relieves life's stresses. I'm going to learn to surf this year too...I want to be able to be in the water with Cole when he tries it next summer! I'd love Dan to try too...if we both were able to surf just a little, we could do it with Cole whenever he wanted to...It'd be a great family thing...

Thankfully, there's nothing major coming up for Cole. He can enjoy the rest of first grade with only the responsiblity of homework to worry about. And so far, he loves homework...Big smiles for homework! Most of his homework is math, which for whatever crazy reason he loves and does very well with. They also have to write a short story each week and that seems to be something he likes too. His stories are usually very amusing. When assigned to write about a member of the community he would like to have come over to his house, and what they would do, he wrote about his pediatrician coming over and playing tag in the backyard...laughing as we wrote the story because he knew it was a funny thing to want to do...man do I love that kid!

Man? Did I really just write that? Admittedly, in my head I use a lot of less than choice words that I usually edit out when I write...but what other word would you use to punctuate the feeling? God? I really try to avoid using that...Damn, same...Man works sometimes, especially if you grew up in the 60's/70's...it's just part of the repetoire. And on that note...

ZZZzzzz

Before having a child I admit to completely taking sleep for granted. Since having Cole, I find a good night's sleep to be somewhat elusive. The first six months of his life were spent with me pumping breast milk (Cole never learned to suck and is fed through a g-tube) every few hours and then on opposite hours, feeding the little boy. By the time I ended the affair with the pump, he was sleeping well and not needing to be fed throughout the night, and I felt lucky...I had so many friends who suffered longer periods with poor sleepers. Little did I know that a couple of years into it, after I'd been lulled into believing that my angel was a wonderful sleeper, his routine shifted. I think it started with a daylight savings switch. Cole started waking up in the 4's (a.m.s!). Sometimes, the 3's. He'd be going to bed at 7 pm so by 4 am he'd have a had a pretty decent sleep...(decidely not!). He'd just be wide awake and because I was not, I'd let him watch something in bed with me so I could doze. This strange habit of waking at odd hours has become a regular thing with the boy. For months each year, he settles into jags of waking up in the 4's and not being able to go back to sleep. Even if he goes to bed a little later, he still wakes up at the same time and somehow manages to make it through his day. During the time he's asleep, he sleeps deeply and peacefully...He's still what I might consider a good sleeper...He's just an extreme riser! I AM NOT!!! My day doesn't end until he's settled into bed and I've cleaned up after the day. Then I crash with Dan and watch TV, or read, or whatever...I try to go to sleep by 11pm, and lately even earlier, but 4 or 5 hours is simply not enough sleep for me...The dear boy also has taken to a new habit, bourne out of him not wanting to be awake alone, where he topples over me as I try to sleep to the hum of Blues Clues or Sid the Science Kid, with a huge dopey smile on his face. Or he stretches his legs out across the bed so that he can kick and nudge me in the belly or butt, whichever way I happen to be turned, until I sit up with him and mindlessly watch his shows...There's simply not a lot to do at 4 in the morning...When I feel spritely (HA!), we read, but it's dark and cold and I am just not ready to get out of bed and start the day...I dream of the day he decides 6 am is a good time to wake...I'll be cheerful and rested and the only reason I won't want to get out of bed is that I'm too busy snuggling my late sleeper! Ah....A girl can dream can't she???

Catching Up

I've been feverishly working on a project for the past few weeks so everything feels neglected, save work. The holiday brought a much appreciated break, but the contemplation of thanksgiving started the week before. I attended an event for Vital Voices (at this amazing home in Malibu..dreaming...), where a Kenyan woman shared her life story (thus far, she's just 30 so I suspect she'll have far more to accomplish and share over the next decades!), and her dreams of starting the first school for girls in her village. She's been educated in the US, a major feat for a woman from a small village in Kenya, and her story, while somewhat familiar in a world that more easily reaches across oceans and continents, resonates deeper when shared in a personal environment. The evening reminded me that our lives all touch one another and that by simply sharing knowledge, we support each other.

The next day we attended the opening of Halloween City, a city that the first grade created. They spent the past couple of months electing officials, creating jobs, making goods to sell (wonderfully tacky, feathered trash cans sold by the sanitation department, check book covers at the bank, book marks at the library, jewelry, and more). There were buildings that were decorated and set up in the three classrooms where each business showed their wares. Cole was one of the librarians. There were four and each one wrote a story and read their story to any customers/guests who dropped by the library. Cole's was recorded into his Tango! so he could read about why he'd like to be an astronaut...It was amazing...The whole city was so detailed and the kids created everything...They have another project after winter break, and then after spring break they are building a rain forest as the culmination of their section on environment...I don't remember doing such creative, interesting projects when I was in elementary school...let alone in first grade!

The long holiday weekend was festive. We had a friend in from the UK so we took a year off from the big family festivities and hosted a dinner ourselves to share the holiday with him and with our dear friends Nancy, Muse & Sophie, and grandma Babe...Dan, Nancy and I cooked together which was fun and relaxing and as it should be for Thanksgiving feasts! The nieces stopped by for little while after the family dinner which pleased Cole to no end...If I could tape the squeal of glee he shouted when they burst through the door, everyone would want it for a ring tone or something...it was sheer delight!

Friday I took Cole to a birthday party at a jungle themed gym with a forty foot blow up slide, among other torture devices...We climbed up, no easy feat, and then I looked down and had a moment of panic...Not a fan of heights...alas, no way down but to slide so slide we slid...and it was fun...fun enough to do it again!

But the real fun came Saturday when we went hamster balling...A friend of a friend had one of the Bolt promotional giant blow up hamster balls and we took it to our park for some rolling...We all tried it and I now wish I had been less shy about doing it more because I really want to do it again, and again...There's nothing like sheer unadulterated play time to relieve any stress or sorrow...

Yesterday we put up our tree...This year we went with the fake silver sort of 60's style mod tree...We're going away after the holiday so we thought it would be better than a live tree this year...It's decorated in pink and silver and is completely, but beautifully, cheesy. I personally love it. I know Dan would like a more traditional set-up (next year)...but the sparkly pink tree really cheers me up and amuses Cole...

And now today...I should be working...Cheers!

The Diorama Project

Cole had an assignment this month to create a diorama related to the community. His class has been collectively working on Halloween City, a community they created earlier this month. They've been building the city in the outdoor classroom, voted for officers of the city, and took jobs in the community. Cole is the librarian. His friend Sophie is the mayor. Cole served on Jacob's campaign but is happy for Sophie. It's a pretty amazing project and they're learning so much about the way communities come together, elections, and more.

After much deliberation, Cole chose to do a diorama of the Farmer's Market. We go nearly every Sunday morning and have done so since he was an infant, bouncing about in his bjorn...To my mind, it's a perfect way to ease into Sunday, or out of Saturday...

I wanted to try to find ways for Cole to do some of it himself so we used a non-drying clay to make fruits and veggies and baked goods. We took lots of pictures one Sunday (at his direction) and then he chose those that would be on the inside and outside of the box...He then decided what vendors he wanted, and insisted on balloons and a petting zoo (our local market has a petting zoo, train ride, bouncer and pony rides, besides all of the produce, craft stuff and the best breakfast burritos!)...I mostly just helped to facilitate his ideas...I found puffy flower stickers that he could press together on a pipe cleaner for the flower vendor, and he had fun with the clay making apples and pumpkins and zucchini...It came out so cool...He presented it today using his Tango, explaining why he chose the Farmer's Market and his friend Steven held it up to show the class for him. He couldn't have been prouder! (me either...)

The Boy's World

Cole's personality is developing in noticeable measure. I realize it's an ongoing reality of growing up, yet lately it seems that it's evolving before my eyes. He's always had a strong persona but when he was younger, it was quieter and not always obvious unless you spent time with him. Now, he seems to be coming into his own, bursting at the seams.

His sense of self is more evolved and his desire to be heard and recognized is more determined. He's finally starting to understand that if he doesn't speak up for himself, for what he wants, likes, and needs, others will not know how to fulfill his wishes. Where he was once accepting of my responding for him or making choices for him (usually after much unsuccessful prodding to get him to make the choice himself), now he is more respondent, more communicative, and more sure of what he wants to say, do, play, and of course, what he doesn't want to say, do or play! It's a beautiful thing.

It's also fun to observe the new him with his friends. This past week he had both a sleepover with his friend Aura, and a playdate with his friend Jacob. They are two of his closest friends at school and they both have an innate understanding of Cole. They both talk to him, not at him, and listen for his response, understanding his response. They play together, and except for Cole's need for physical assistance, I could be elsewhere and they'd be just fine. Cole and Jacob tell secrets which I find heartbreakingly amusing. They whisper and conspire and seem wholly satisfied knowing that they share something special. Apparently they tell secrets in class too! (Jacob is in Cole's class, Aura is in a different 1st grade class but the two spend recess and lunch together every day...).

Every day it seems like Cole has something new that makes him laugh or that he is interested in. Each day as we roll in to school, a new friend says hello to him or an old friend references something they shared the day before. It's fascinating to have these little sneaks into his life, his life outside of the life he and I share. Selfishly, I wish I could have more peeks into his new world. Proudly, I am tickled that he is coming into his own and enjoying the place he's at right now with such obvious delight.

Clearing Cobwebs

I was reminded of how sometimes nothing is better than driving in the car, blasting music, and clearing out the cobwebs in your mind. I drive a lot. It's the downside, in my view, of living in Los Angeles. You have to drive...I'm not a big fan but my boy goes to school 9 miles away, which can take anywhere from 15 to 45 minutes (this morning) to get to. He rides horses about 45 minutes away on Saturdays. His friends live all over the Valley, and our friends live all over the city. I drive, mostly back and forth...

Most of the time Cole is with me, and like his father and I, he's a fan of music and while his taste is diverse, he often locks into one or two CD's that he's willing to listen for a number of weeks. Right now it's a rotation of the Hairspray soundtrack and two Laurie Berkner CD's. I could kill myself...Hairspray was okay for the first few times but after about 100, it's just nails on a chalkboard. And Laurie Berkner, well, she's all right for little kids music. I can tolerate her occasionally. But two discs for running on a month and I just want to scream. The worst part is that her catchy little tunes worm their way into the depths of my brain and I can't stop humming them.

I should point out that I have a fairly serious humming problem...I subconsciously hum pretty much all of the time. I hum whatever is my head, even when it is completely different than what's on the radio. I hum when I chew. I just hum. I'm rarely aware that I'm doing it and it both endears me to and irritates Dan. My brother does too. I think my dad might have too. Maybe it's genetic?

Anyway, for the past weeks, months, I've been tuned to NPR...The political beast got the best of me and when I was alone in the car I craved news...This morning however, I threw in a compilation disc of 70's punk rock - No Thanks...and while it's a compilation of sort of hits and best of type songs, they're great...they're best of for a reason and while maybe not representative of what my favorite tunes by the bands might be, it's one stop listening and I had the best 40 minute traffic groove in a long time! Windows down...radio blasting...singing loudly...bopping in my seat...making a general nuisance of myself ambling down Ventura Blvd...But tell me, who can sit still while listening to the likes of Nick Lowe, -Ray Spex,the Stranglers, the Jam, Mink DeVille, Stiff Little Fingers, the Damned, The Stooges, Undertones, The Clash and Blondie? NOT ME!

Challenge Air

Cole had the amazing opportunity to participate in an event sponsored by Challenge Air, a non-profit organization that takes children with special needs for airplane rides. The event travels the country throughout the year, supported by individual pilots who lend their time, planes, and gasoline to take the kids for 1/2 hour rides around their community. It's really cool! The planes are neat...mostly four seater cesnas and hoppers (go me, getting the lingo down!)...There was a stunt pilot there who was just finishing a run when we arrived. I think he did stunts throughout the day but we were the first group to fly so we missed any further stunt flights. They also raffled off helicopter flights throughout the day. Dan went up with Cole and while they both seemed a little nervous at first, the smiles from both after were priceless! Cole's are bigger even now, having had some time to really digest what he experienced. It was a great morning!

Reconnecting

Since joining facebook I've reconnected with a great many people from my past...It seems strange on one hand to be communicating with someone I haven't been in touch with for twenty or more years and on the other hand it seems so comfortable...There are many people I held dear for a specific time in my life that I lost touch with but do think about from time to time. Life moves too quickly to dwell on past friendships or relationships so the moment passes until the next time. With facebook, or something like it, it's relatively simple to find someone without much exepditure of time or energy. Some people find you too. There's a comfort in knowing someone you think of occasionally, likewise thinks of you. Our past lays the foundation to our present. Some of the people I have reconnected with are people who have had influence on the person I am today. Others are people who passed through my life and now serve as reminder of times forgotten. There are also a few who will become or have become a part of my present. We now bring new depth to our past friendships, coming at them from new perspectives and with greater life experience and understanding. And for that I am grateful...

Reading, Writing, and 'Rithmetic

Dan and I had a "team meeting" with Cole's lead teacher, the inclusion specialist, and the LAUSD speech pathologist (a happy addition to the meeting) to talk about his progress thus far into the school year and specifically to ask for help and direction with regards to literacy. We have an inkling that Cole can read but have no idea as to how to gauge the level of comprehension or word recognition. He does well with spelling and recognition of sight words, a continuation from kindergarten. His interest level in books has risen to chapter books. Last year he was riveted by the Spiderwick Chronicles and the Magic Tree House series. When asked questions about what happened in previous chapters, he shows an awareness and recognition. And if I read the wrong sentence or word, he often indicates that something's amiss. To me, all indications that he's reading something.

Thankfully, his teachers do too. They encouraged us to continue with what we have been doing and to trust our instincts. They are working to develop methods to allow him to develop a phonetic vocabulary of letter and word sounds even if he himself is not actually saying the words. Understanding how they should sound and having the ability to sound words out phonetically in his head is important to his mastery of reading, writing and spelling. All skills he needs to stay on track with even at this early stage in his education. These are the first blocks...

Math wise, he's doing well. From what I can tell from my homework experience with him and math, is that it's more tangible. He recognizes numbers, understands what they represent, and can tangibly display this knowledge using sets of objects. It will get harder as math becomes more complex but he already has an excitement for math (and science) so my hope is that his interest will lead him.

It's a fascinating journey...There's so much that Dan and I have to learn as well in order to keep up with him and to support his skills. It will keep our minds sharp!

Cole's Me Bag

Cole's class has been doing Me Bag presentations each Friday. Cole's group did their presentations last Friday. The kids were asked to decorate a paper bag and then to tuck up to eight items that were meaningful to or descriptive of the child. At school the kids, one by one, shared why each item was included and answered questions about them.

Cole chose to decorate his bag (a sparkly blue gift bag reused from his birthday) with pictures of his life and some favorite things (like Ellen, Little Bill, Rachael Ray, and of course, his cousins). Surfing was represented, as was horseback riding and Bear & Charlie (his dog and cat).

The following items were included in the bag and the reasons are all Cole:

1. His wetsuit - I like my wetsuit because I like to swim in the ocean all day.

2. Igloo (Iggy), Cole's Polar Bear Webkinz - I have fun with my webkinz, Iggy, on the computer.

3. Nate the Great book - I like to read Nate the Great books because he's funny and solves mysteries.

4. Triangle Crayons - I like my crayons for coloring and my mom used them when we do math homework.

5. Wooden Toy Bowling Set - I love to go bowling!

6. Wooden Spoon - I like to help my mom and dad cook.

We programmed everything into his Tango! so he could do the presentation himself. Apparently, he thoroughly enjoyed his time up front and when it came time for the next child to do their presentation, he was loathe to leave the "stage". The hook came out and dragged him away!

I wish I could have been there to see him. I was there at drop-off and pick-up and did see a lot of other kids checking out the outside of his bag, surprised to see him engaging in so many different activities that they like to do too. It turned out to be a terrific way to share a little more about himself with his peers who didn't know he loved bowling, or that he could bowl in a wheelchair, or that he could ride horses, or boogie board. It made him happy to see the kids somewhat impressed with his achievements and interests. The bag was a good reminder for them that he's not all that different...

Cole's Class

Cole finally relented and allowed me to sign up as classroom volunteer this year. For years I've been trying to convince him to let me volunteer for an hour or two a week to help his classes and for years he's emphatically said NO! I've been respectful and done other things to help that didn't require me to be in or around his class but this year he said Yes! Yesterday was my first day...I ran a math center (and will be doing so weekly) and had so much fun getting to see all of the kids in the class setting. I know many of them from parties, playdates but not in this context, so it was awesome to have the chance to help out and to see them in class.

I had concerns about Cole's reaction, despite his allowance. We talked about the fact that I wouldn't be there as Cole's mom, but as Ms. Cynthia, there to help his teacher and to work with all of the children, not only Cole. He found this notion funny and seemed happy when I arrived for math...Things seemed to go well as each group passed through my "subtraction sentence" game center, but at the end his teacher asked me to stay after to talk. ??? Turns out I was a huge distraction to the boy who did not focus on his work in his centers despite reprimand from his teacher and the other center leader. She said she wouldn't ask me not to come, yet, but that if he didn't get over the novelty, I'd have to stop volunteering in class. I was just glad he didn't cry when I came in or left but now I have to worry about him not doing his work because I'm there...

I just don't know...perhaps he and I are better off having the independence from one another that school time affords us. I believe that's why he fought against me being in class previously. School time is sacred it him. It's HIS time. His opportunity to be Cole alone...It's important, valuable time for him. And now I'm thinking for me too...

Think Pink

I'm having a sad, contemplative day...I learned that a friend I hold dear has been diagnosed with breast cancer. She doesn't live near and we're not in frequent touch, but I love her. I don't know much about her condition other than it was detected early and she's having surgery tomorrow. Dan and were just talking about her this past weekend as I read him tofu recipes (she and her husband are vegan) in hopes of inticing him to not eat as much meat...They're a family that is always in our hearts but we don't often do a good job of just calling to say Hi or emailing...it goes both ways and they're never far from our thoughts. It's hard to hear such news. It's the kind of news that makes you want to wrap your arms around your friends and whisper confidently that everything will be fine. (and it will by the way...). It's hard to be far away and want to say "anything you need"...because you mean it and you'd be there if you could...

Reminder

The two have been popping up in my mind this week...Since reading Elizabeth McCracken's recent memoir, An Exact Replica of a Figment of My Imagination, I've relived both my pregnancies over and over. Only the first went to term. Cole. Both seemed normal, yet both had their individual traumatic outcomes. Elizabeth's memoir chronicles her two pregnancies, her first, heartbreaking, stillborn, and second, joyful, a healthy boy. I felt a kinship to her experience because I've found that atypical births are uncomfortable and untouchable for most people. You find yourself in another part of the hospital, away from the mothers who have healthy babies. Understandably, in my head, yet not in my heart, no one knows what to say to you or how to approach you. Your path will be different.

Raising Cole has been a day to day, hour to hour, minute to minute learning experience. His development doesn't resemble the milestones outlined in parenting guides. Along with playdates and outings, his days, from eight weeks old to present, include things like physical therapy, occupational therapy, feeding therapy. His daily routine includes stretching and powerful medications. Things like chosing a book to read or selecting a toy or game to play with often take countless guesses and I'm fairly certain don't always end up with the correct guess. He's just patient and relents with the next best. He handles his life with grace. There's a sort of inate acceptance of his condition and of his limits that allows him to move beyond them and to continually surprise with new actions, interests, words, abilities. He amazes me every day.

The other thing that provoked my thoughts of motherhood was Jenny McCarthy guesting on Oprah a few days ago, talking about Warrior Mothers. I know many, not just mothers, but fathers too. And not only parents of children with needs. Inspiring moms and dads who continually show their children respect, interest and guidance with the perfect blend of love, authority and understanding. Some of the battles are different for parents with children who have special needs. We find ourselves becoming verse with medical terms, with education law, and we develop an unspoken kinship with other families who brave the same. Before having Cole, I had never heard of an IEP. I was unaware of the various schools of therapy. I didn't know what an AAC (Augmentative & Assistive Communication) device was. Now I'm learning to program and personalize one...and Cole is learning to better communicate with it.

His life opened mine up in ways I could not have imagined. But when I remember, relive, his birth, I still find the emotions fresh and tangible. When, after a couple of extremely uncertain days, one of the doctors actually said "tomorrow" in reference to a test that they'd run, and I thought, "there will be a tomorrow?", I finally breathed. And continue to do so daily!

The Boy Turned Seven

I find it hard to believe that I have been Cole's mom for seven years! Longer, if you include pregnancy, which I personally do include since I had the great fortune to spend every breathing second with him during those months. Cole's come so far since his grand traumatic entry to this world. He celebrated his 7th with twenty friends in our backyard doing crazy experiments and watching a wonderfully amusing science show put on by Dan and our friend Muse. The kids were in stitches and then completely wild banshees running around with cups full of disgusting goo and worms and bugs and electric green slime. I made Cole's cake...a horrible crumbling tower of red velvet volcano cake held together by absurd amounts of chocolate frosting oozing with red and sparkling orange lava! It was a definite kid hit! The whole party seemed fun. I remember my mom putting together home parties for my brother and I...There's something so nice about being at your own house with your friends and family and just playing...We didn't do anything fancy but the kids were happy, engaged and crazed the whole time. They made Sharpie marker tie-dyed "lab coats" to wear during the science stuff. Having the craft ended up being a terrific ice-breaker for new friends to ease into the festivities and gave the children something to do while everyone arrived. All in all a success...The boy loved it!

Day One

I've moved my blog...Today is the first day of the new one. As a means of (re)introduction, I am a mom, first and foremost. I have an almost seven year old boy, Cole, who is the inspiration of my every move. He was born with cerebral palsy. His disabilities are largely physical. Cognatively, he is bright. He has a well developed sense of humor and an incredible determination. Every movement requires effort on his part and he handles this lot with a grace beyond his years. He is in the first grade at a school where he is fully included. He's never been anything but included. We have done our best to allow him to lead a life not unlike his peers. He is the beat of my heart.

Besides being Cole's mom, I am an ever evolving woman...Typically, much to the chargrin of my husband, I refer to myself as a girl...I'm not sure why that is? A mad desire to recapture my youth? No! Not that my youth was all that terrible. The formative, most impressionable years were spent in the 70's...I was fortunate to grow up during the most active, interesting, provocative years of punk rock. I'm told that the music of your youth is the music you continue to love throughout the years. True! On those rare occasions I find myself alone in the car, the old punk rock blasts and I do my best impersonations of Poly Styrene, Johnny Lydon, and the like. Yes, I am the weird mom in the minivan singing and bouncing about...

My old blog was largely posts about what runs though my head and updates on what Cole is up to. I initially started it as a means of keeping in touch with out of town friends and family when Cole was having a surgery a couple of years ago...Of course, I got hooked on writing and emptying my head of all of the gunk so after a couple of months without much output...I'm back.