IN MY ROOM
January 22, 2015

I came home a little early tonight because my husband had a meeting to attend. Cole usually loves it when I’m home early and we have a “mom-Cole” night. We usually do a little sharing of our days, a quick pass through his school binder, and then we usually settle in and watch a little TV, have dinner together, bath, maybe a little reading and bed. It’s nothing special but it’s just the two of us and we both used to really enjoy the little time together.

Tonight, however, the teenage boy that I now know as my son, preferred to spend the evening in his room. He’d already started his dinner in his room when I got home because he was really hungry, and once my husband took off, I suggested he come hang out with me in the living room. No thanks, mom. I want to stay in my room. The whole time!

I had dinner alone, not sure of what to do with myself. It’s so strange to be home in the house with Cole but not to be in the same room. I know it’s a typical teenage behavior and I am so pleased that he likes hanging out in his room. I’m just not used to it. For thirteen years he’s been unwilling to be alone in a room and now out of nowhere he loves it!

I can certainly get used to this growth. I feel like it’s a positive change for everyone. We enjoyed several dinners in the dining room sans Cole (who was happily hanging out in his room) during the weekend while our friend was visiting, and tonight I did a little guilt free work while I had dinner on my own. I still kind of missed him though…

Cole and I are on our own Saturday and Sunday this weekend…I’m hoping he’ll want to spend some of the home time with me! If not, I’m making some plans of my own…hello facemask and pedicure! Maybe find a movie or two to watch…a little house project I’ve been putting off…quiet dinners with my husband in a candlelit dining room.

I’m starting to see the possibilities of this new routine!

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IN MY LIFE
January 20, 2015

My husband’s oldest and dearest friend has been in town visiting from Baltimore during this past long weekend. He’s an educator and is coming to visit our amazing charter school, CHIME Community School. The charter at our school is inclusion and he’s interested to see if there are practices that he can bring back to his school. So we’ve been lucky to have the long weekend to hang out with him and more than anything, Cole and I have had the fun of seeing the two of them together.

Being blessed with some friendships that have thrived for over forty years now, I completely appreciate the bond that comes with growing up with someone and continuing to love them decades later. My husband moved a bit when he was young, and even as an adult, but has maintained a close, tight bond with his friend. They met when they were 11 years old and are now both 43. There’s something so dear in watching the two of them together. Time and spatial distance don’t seem to matter. Seeing them, relaxed, chatting and laughing together warms my heart.

Friendships like theirs are to be treasured and I know how deeply my husband values their bond. I wish they lived closer to one another because the effect of them spending time together is better than a spa weekend. There’s a joyful light in my husband’s eyes and he seems renewed. I feel like that when I’ve had some “old friend time” too, so I recognize the delight.

It makes me happy to see, and Cole seems to find it equally delightful. He’s completely taken with the two of them. He happily spent the afternoon wandering around Santa Monica with the guys, and still couldn’t get enough of the two of them. I hope that he has the fortune to have a dear, old friend or two or three when he gets older…there’s nothing quite so special.

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LOST IN THE SUPERMARKET (Series – 2)
January 17, 2015

One of my husband’s oldest and dearest friends is coming to visit from Baltimore, arriving later today. He’s been a vegan for his entire adult life. We will be sharing lots of meals over the next few days so I want to cook and not just take out food. We always bring in Indian food so I wanted to do something different. We don’t intentionally prepare vegan meals for no other reason than we don’t have to. There are things I randomly make that are vegan in nature, though I often compromise them by adding cheese to finish thing like ratatouille, one of my favorite things ever! I decided, to add protein to the meal, I’d start with a quinoa base and serve some sort of veggie mix over it.

Quinoa is a great base for savory and sweet. I’ve made this basic recipe and added dried fruits and nuts with a drizzle of maple syrup for an easy, satisfying breakfast. I’ve also added left over peppers and onions to it with a fried egg, sprinkled with some Aleppo peppers for a savory breakfast.

For Josh, I’m going to do a fall veggie stew…Inspired by the great squashes and greens in the market right now. I might add some toasted walnuts to it but below is my initial recipe…straight out of my head…

Basic Quinoa Recipe
1 cup quinoa
1/3/4 cup water
Sea or kosher salt to taste

1. Rinse or soak the quinoa before cooking.
2. Place the quinoa, water and a hearty pinch of salt in a large pot over high heat. Bring to a boil, and then lower the heat to a simmer.
3. Cover and cook for about 15 minutes until all of the liquid is absorbed (but the quinoa is still wet) and the germs have begun to spiral.
4. Turn off the heat, place a dry paper towel between the pot and the lid, and let sit for at least 5 minutes.
5. Fluff with a fork before serving.

Roasted Fall Vegetables
Butternut squash or any favorite pumpkin or squash – peeled and cubed into 1 inch pieces
Mushrooms, trimmed and cut into 1 inch pieces or if small enough left whole
Cipollini onions, peeled and left whole if small enough or cut in half
Cauliflower, broken down into bite sized pieces
Red Swiss Chard – leaves removed from stems and cut or torn into fairly large pieces
Garlic – add chopped cloves to taste – I love garlic so I’d use maybe four cloves
Aleppo Chili Flakes – big pinch
Fresh Thyme – about a tablespoon of the leaves removed from stems
Olive Oil
Salt and fresh cracked pepper to taste

1. Toss everything together on a sheet tray, making sure all of the veggies are coated with the olive oil and spices.
2. Roast at 400 degrees in the middle of the oven for about 20 minutes until everything is tender and carmelized.
3. Finish with a drizzle of olive oil and sherry vinegar. Add a touch more salt and/or pepper if necessary.

Toasted walnuts would be a great addition to add a little crunch and earthiness, and of course, if you’re me, and not a vegan, a smattering of goat cheese would be a luscious addition…

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LET’S DANCE
January 16, 2015

Tonight is Cole’s middle school Winter Formal Dance. It will be held the school auditorium from 6-9pm. Cole’s going, It took him a while to decide whether or not he really wanted to but ultimately he decided he wanted to go.

He loves to dance, but in truth, he never really has a great time at these school dances. I’m not sure why. Probably the poor acoustics in the in auditorium making the music unbearably loud and the general chaotic nature of middle school dances. He’s not one for big loud or crowd.

However, I suspect that the lure lies, in no small part, in the desire not to miss out. Kids have been talking about it for the past couple of weeks. Everyone’s asking everyone if they’re going…trying to figure out if the cool kids will be there.

All of the kids in our little friend/family tribe have been wavering as to whether they’d attend or not, and slowly as the day approached, each decided to go in the end. Funny how they’ve all come to the same conclusion. No one wants to be the one who missed out.

Missing out on a school dance is a big deal when you’re thirteen. Even if you don’t really want to go, you could be missing out on the chance to witness something everyone will be talking about or to dance next to or with that cute guy or girl in your class, or to just have fun hanging out with your friends on the sidelines. Being the lone kid out on Monday morning when everyone is rehashing the dance feels terrible.

So off he’ll go in his cool dotted Crew Cuts button up with a contrasting striped tie (it is a formal)…ready to dance and have a memorable time with friends. I’ll probably be sipping wine somewhere nearby with the other parents as we wait for the kids to text us to come pick them up…kind of wishing I was dancing too…

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ALL BY MYSELF
January 15, 2015

I dream of finding a little alone time in my day, my week, my month, my life…

My weekday generally consists of waking around 6 am, going through the morning routine of getting everyone ready for school and work. The boys leave around 7:30 am, and I usually run around the house doing a little tidying, having some breakfast, and getting a jump on work emails before I head out to the office. I am guilty of using this time to dawdle too. It’s literally the only time I’m consistently alone in the house, ever.

Then I work…I work for an international film distribution and production company. It’s a business I’ve been in for about twenty years in one way or another. I currently do contracts and financing and formerly, pre-Cole, did international sales. I enjoy it. I work for an interesting company, with a great group of people, and am challenged by my work. I generally leave work by 6:30 and arrive home sometime around 7-7:15 pm.

My husband picks up Cole from school and usually has his homework and dinner handled by the time I get home. One of us then prepares our dinner, we try to cook most nights, and then we settle in to eat, bathe the boy, and get him tucked into bed by 8:30. He still prefers if I sit with him while he falls asleep, so I usually try to watch a one of my TV shows quietly while the boy falls asleep (my husband and I have some shows we enjoy together, and some not so much!), whilst playing Words With Friends or catching up on some favorite web news.

If I don’t fall asleep while putting Cole to bed, I’ll indulge in some TV with the husband and then do some reading (pre-bed reading is a must) before I fall asleep around 10:30. And then, it starts all over again. It’s very Groundhog Day.

There’s little opportunity in the day for alone time or me time. Maybe it’s selfish. There’s nothing specific I do when I have a bit of time to myself. In fact, I usually end up doing some of those little housey projects that never seem to get done – revamping the linens closet, or clearing out Cole’s old clothes and toys, or tossing all of the old tea from the cupboard (yes, tea expires as I’ve recently learned! That 2009 box of Christmas Chai is probably not going to taste very good!). All mundane, but all satisfying accomplishments. All simple tasks, but all things that an impatient, sometimes demanding child make so hard to do in the context of shared time.

And forget about the kind of me time where I can take the time to give myself a pedicure or manicure. The boys complain about the odors of the remover and polish making it harder to do in shared time.

Weekends tend to be more family time, or time that Cole and I spend together. Because I’ve got longer work hours and commute than my husband, they have several hours of time together that he misses with me, so come Saturday morning, he craves mom time. We usually try to get out of the house and do something, even if it’s just errands and our regular lunch with my mom. It gives my husband some time to himself…The boy is less inclined to go out with just dad during the weekend because he’s somehow come to view it as “our” time. Unless of course he’s holed his teenage self up his room to have his own alone time (his new favorite thing). I suppose I should learn to take advantage of his need for “me” time, and try to sneak a little of my own at the same time!

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WHEN I WRITE THE BOOK
January 14, 2015

This year I’m determined to learn how to better promote my blog. I’d at least like to figure out how to link it to a Facebook page I created for it. I’ve come to realize that I enjoy sharing my writing more than I previously thought I did. I don’t necessarily feel like I’m full of great wisdom or extraordinary insights or humor but I love the outlet writing gives me and I’ve come to understand that writers write to be read. While I may not be a writer per se, not yet anyway, I will admit that sharing my words is satisfying.

Writing is simply a medium of expression. Like an art, it’s best when shared. I harbor a dream of completing a novel that I’m writing. Well, of completing one of the projects I’ve started over the years. I kept journals for many years and thoroughly enjoy the art of letter writing. I save them and I send them. An actual letter through the post is a treasure. I have letters from my dad, my grandmas, old boyfriends and friends. I save the beautiful cards my husband gives me, and a small scrap of paper where he wrote a sweet nothing to me before I traveled when we were dating. I have a box somewhere with notes passed between girlfriends and I during class in middle and high schools. Words to paper make me swell with joy.

Since my early twenties, I’ve had countless false starts at writing my debut novel. For a short time I toyed with the idea of a collection of short stories. They’re a medium that I greatly admire. The art of the short story is far more of a challenge than a full blown novel because to create a magical short story, it has to unfold so much more quickly but still have the impact of completion. I’ve started all sorts of different chapters of different stories, never to finish any of them. It’s only recently that the idea struck for a book idea that I might actually finish. That accomplishment would feel amazing, even if nothing were to come of it. Just the idea of completing a book…it’s enough.

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DON’T STAND SO CLOSE TO ME
January 13, 2015

Cole’s maturing in some ways and not so much in others. It’s a fascinating process to observe. He rails against our efforts to lead him forward but then has recently found preference in hanging out alone in his room, watching TV or listening to music for hours at a time. Up until this point, he’s never found comfort in himself so we’re thrilled by this typical teenage move. I feel great pride in his newly found step toward independence.

Also returning to school after the winter break has been surprisingly stress free. Prior to the break, the morning routine had been tough. For the first time, Cole was not enjoying school, which made morning prep difficult. He teetered between saying he was not feeling well, or was sad, or just angry. The past week and into the current week, he’s easy and happy about going to school. I’m not entirely sure what changed but he’s seemed to have found a way to look forward to school again. There was a change in staff, a new teacher who he has for both Social Studies and Language Arts, which may be part of the interest in school again. The former teacher never managed to understand the concepts of inclusive education so he had a lot of frustration of being overlooked in her classes. Whatever the incentive, it’s a relief to see that he’s found his way back to liking school and he came to it on his own.

When one is physically dependent upon others for nearly everything, developing self- confidence and having opportunities to find trust in one’s self is crucial to having good self-esteem. I see Cole starting to recognize that he needs time to himself and that he needs to have us (us as his parents, and us as all of his supports collectively) respect his choices and to provide as many opportunities for him to have more independence. For now, I’m proud to step back and support his efforts to stand away from me.

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LOST IN THE SUPERMARKET (Series – 1)
January 12, 2015

I love to cook. I’m considered a decent home cook by my friends and family and am pretty adept at off the cuff recipes and recreations of dishes I’ve adored in restaurants. I started cooking when I was a teen. At some point, I decided I wanted to be a vegetarian. My mom supported this but wasn’t up for making separate meals for my brother, dad and herself, so she said I’d have to make my own meals. I’d always liked cooking with her and with my dad, who never followed recipes, creating sometimes, amazing dishes, and sometimes terrible – the grape jelly omelets were among the worse!

As my cooking skills improved, I started doing stray dinners for mostly the boys in my life. I’d host Saturday night dinners so we had nourishment before we went clubbing. Among the favorites were seafood pasta (oh how I wish I could remember how I made that now!) and spinach strudel.

Sharing meals and cooking for friends has always been an expression of my affection. When I have no words of condolence that seem helpful, I bring food. I make treat baskets for our neighbors, the postal carrier and gardener during the holidays, and I often make extra batches of dinners to share with my mom and her boyfriend. Cooking makes me happy. Everything about cooking, from the supermarket, to the preparation to the final touches, pleases and relaxes me.

With the demands of my life now I don’t have the chance to experiment as much as I once did. We do try to cook dinner at home most nights, avoiding take-out as much as possible (unless there’s a mad craving for ramen!). We plan our meals each weekend and head to the supermarket and Trader Joe’s to procure everything. Sometimes we wait until Sunday mornings to be inspired by our local farmer’s market but it’s not always the easiest thing to do. Then, I’ll try to do a couple of dishes on the weekend so we have easy prep for weeknight dinners.

Lately however I’ve been in a bit of a rut. I feel like the weeknight meals are starting to all look alike. There are a dozen or so meals that we do with regularity largely because they’re relatively healthy and easy. Time runs short on weeknights. I don’t get home until 7pm from work, and Cole goes to bed around 8-8:30pm, so time is precious. Cole usually has had his dinner (he’s fed via g-tube as I’ve mentioned) by the time I’m home, so it’s just the two of us, but also bath and sometimes homework and reading, and then bed for the boy. It goes quickly! Definitely not the time to be experimenting with new recipes!

That said, I’m determined to incorporate new recipes into our repertoire. I plan to introduce a new recipe, especially new grain and veggie based dishes, each week or two. Some may become regulars, and some may be one offs. But we’ll vary our meals and maybe find some new favorites. Stay tuned for the first new recipe and results!

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THE LAST SONG (Series – 1)
January 10, 2015

Somewhere down the line in reestablishing my blog and writing, I decided to challenge myself and have a little fun with the titles of each post by using a song title that connects with the subject, at least in my mind. I’m not sure if anyone’s noticed, or even cares much, but I thought I’d share the artists and songs that relate the posts. I plan to continue this and in the future I’ll doing monthly round up of the artists. Besides, writing, I love music so it’s a fun way to bring the two together. Thus far, following are the titles and their artists:

1. A KISS TO BUILD A DREAM ON – Louis Armstrong
2. A LITTLE LESS CONVERSATION – Elvis Presley
3. ALL I WANT FOR CHRISTMAS IS YOU – Michael Buble
4. ARE YOU READY TO BE HEARTBROKEN – Lloyd Cole & The Commotions
5. BLUE CHAIR – Elvis Costello
6. DANCING WITH MYSELF – Billy Idol
7. DO YOU FEEL BAD ABOUT IT – Frank Black & The Catholics
8. DO YOU HEAR ME? – Missing Persons
9. EVERY DAY IS LIKE SUNDAY – The Smiths
10. EVERYDAY I WRITE THE BOOKS – Elvis Costello
11. HELL ON WHEELS – Charlie Daniels
12. I AM THE DJ (Series) – David Bowie
13. I LOVE TO READ – Nick Lowe
14. I MELT WITH YOU – Simple Minds
15. I WOULD WALK 500 MILES – The Proclaimers
16. I’M JUST A GIRL – No Doubt
17. I’LL STAND BY YOU – The Pretenders
18. JUST THE TWO OF US – Bill Withers
19. LOOK AT GRANDMA – Bo Diddley (in honor of Cole’s Grandma)
20. MARK ME ABSENT – The Clash
21. MASHED POTATO TIME – Dee Dee Sharp (In honor of Cole’s Dad who was in the original Hairspray movie)
22. MERRY CHRISTMAS EVERYBODY – Slade
23. NEW YEAR’S DAY – U2
24. NOVACAINE FOR THE SOUL – The Eels
25. OUT ON THE WEEKEND – Neil Young
26. PEOPLE ARE STRANGE – The Doors
27. ROBERT ONION – Frank Black & The Catholics
28. SCARS – Papa Roach
29. SCIENTIST – Coldplay
30. SUNDAY MORNING – Johnny Cash
31. SWEET DREAMS – Eurythmics
32. TEENAGE DREAM – Katie Perry
33. TEENAGER OF THE YEAR – Frank Black
34. THANK YOU FOR SENDING ME AN ANGEL
35. UNDONE (The Sweater Song) – Weezer
36. WE ARE THE WORLD – The Live Aid song for Africa
37. WHEN YOU WERE YOUNG – The Killers
38. WHEN YOU’RE NEAR ME I HAVE DIFFICULTY – XTC
39. YOU’VE GOT A FRIEND – Carole King
40. THE LAST SONG – The Foo Fighters

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BLUE CHAIR
January 9, 2015

Try to imagine not having the ability hold your body upright to support sitting. Where would you sit? What kind of options would you have? The answer? Very few, and nearly all with straps and supports to keep you in place.

Cole cannot sit independently. He’s had scads of different chairs, starting with high chairs, strollers, chairs that clipped onto tables or strap onto chairs, and his wheelchairs – all seating devices that have straps to hold him in place.

In order to sit on a couch, or bed, independently, he’s propped up and wedged into place with heaps of pillows surrounding and supporting him. He can often get lost in the mix, slipping down or sideways.

It wasn’t until a few years ago we ran across the magical Chill Chair at an abilities expo that featured products of all sorts designed to enhance the lives of those living with disabilities. The Chill Chair (it definitely deserves capitalization!) is the first chair that Cole could sit in without straps or any additional supports. It looks much like comfy upholstered chair with a ottoman attached, except that the seat has a little indent for his tush, and the chair back sort of hugs him. He can sit with his legs up (his preference), or without the ottoman, bent downward. It’s amazing. It’s among the single greatest things we ever purchased for Cole.

We actually have two at the moment. We started to feel that he was outgrowing the first chair, so made the purchase of a second, larger size one only to find it was too big. One’s not quite too small and the other is quite too big! The upgrade includes a table tray that can fold away or be used to hold his Tobii (eye-gaze voice output communication device), or a tablet for listening to music or books, or his tray of Sand or a game…or whatever…It’s definitely a cool, smart addition. He just needs to grow a little more to fit in the chair! I suspect this one will take him quite far once he does fit in it. He’s not likely to be very tall. The Chill Chair rocks.

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