ELEANOR RIGBY

January 30, 2015 - Leave a Response

This morning, as I attempted to style my in flux hair (I’m growing out a pixie cut which if you’ve ever done this, you know is not fun. There are a lot of bad stages until you get somewhere resembling a bob)…Anyway, I have been pulling my shaggy bangs to the side with a little bobby pin and as I slid the pin in today, I had this flash of my great aunt Ellie. She always wore her hair in a short, blunt bob, with a side part, that was barely chin length. Mostly she let the front sort of swoop over her eye, but sometimes she too pinned her silvery hair with a little bobby pin.

I hadn’t thought of Ellie for quite some time. We had been somewhat close when I was younger, though at some point she and my uncle and one of their daughters (they had three, the two eldest both had families and moved to different states, while their youngest, who has special needs remained with them) found solace in the John Birch Society at which point they treated my family like we were all heathens. I didn’t see Ellie much after that and she’s since passed away.

I used to enjoy talking to her, and now wish I could recall more of our conversations because in some ways we now share an unexpected similarity in our life journey. She worked outside the house until the youngest was born and required 24/7 care and attention. I’m not sure what kind of work she did exactly but I know she worked in an office tower in Century City and thoroughly enjoyed the camaraderie of her office place. She delighted in going out for the occasional after work drink or dinner with colleagues and window shopping in nearby Beverly Hills.

As a teen I thought it sounded somewhat glamorous. I caught glimpses of her happiness, of the part of her life that was just hers. She had a wonderfully rich, hearty laugh that couldn’t help but make you share in her delight, but I could tell that she missed this part of her life when she gave it up to take care of their daughter. I didn’t understand all of the implications of her life until I became a parent too.

Her partnership was a little different than mine. I am blessed to have a partner in every sense of the word. My great uncle was a former college and professional football star, and his achievements and notoriety sort of overshadowed their lives, as living in glory days often does. It was natural that my great aunt would give up her career. It was also a much different climate for women in terms of expectation and choice. She did a remarkable job raising their daughter. In a time when the common move would be to put her in a home of some sort, my aunt sent her to school and home schooled her. She was encouraged to pursue dreams and they both funneled most of their energies into facilitating things like her love of horses, tennis and Ilie Nastase. She grew to exceed expectations, but still had limitations that would keep her bound to them, to him now.

But when I recall Ellie now, I realize that there was an underlying resentment. She always seemed a bit angry and often criticized her sister, my paternal grandmother, who led a more unencumbered life. I’m certain she never had someone to talk to about any of her feelings and fears and hopes. She never had the opportunity to find a release or solace in her fate. I wish my present self could have known her past self. We would have a lot to share.

Funny, all of this from just slipping a bobby pin into my shaggy bangs…

DON’T STOP ME NOW

January 29, 2015 - One Response

We had Cole’s IEP today. The IEP is our annual review of educational goals that we, together with Cole’s team (which includes speech therapist, occupational therapist, physical therapist, teachers and school administration), set each year. It’s a bit more involved than that but in general its purpose is to ensure that the necessary services are in place to help facilitate his access to the curriculum and support his needs. All in all today went well and the process was collaborative and informative, with what feel like achievable goals that all, in one way or another, tie to improving and expanding his communication skills, which we feel is vital to his success in school, and in life.

I left the IEP feeling positive and as I drove to work I continued to think about the morning. Despite the process and conclusion of the IEP being positive, it also strangely serves as a reality check. In order for it to be successful and appropriate, we have to accept that some goals from the previous year were not met and that even though we believe that Cole could have, should have achieved them, he did not. There are so many factors that play into his success. Some he can control and some that are out of his hands.

The effort that is required of him to construct even a small sentence or find specific fields in his Tobii (the eye gaze voice output device he uses to “talk”) is considerable and if he’s distracted by a friend or sound or himself, starting over makes the process that much harder and after time, that much less interesting to him.

Motivation seemed to be a running theme. Like most kids, when he has an interest or curiosity he can be quite adept at finding the word or words to communicate. When he’s relaxed and no one is paying too much attention to him, he can quickly find things on his Tobii, or can say actual words. There’s no stress or pressing need. However, when pushed to a task or asked to find specific words or phrases on Tobii, he seems to have trouble focusing, or worse, doesn’t always want to, and therefore does not try.

In addition to highlighting his strengths, the IEP shines light on his weaknesses and brings some of his limitations to the forefront. In our family, we tend to lead with hope. We have instilled the belief that he can do anything he wants to do as long as he tries, or as long as we can figure out a way that works for him. But sometimes we’re reminded that despite our best efforts, despite his best efforts, that may not always be his truth. It’s a hard thing to have to face and accept the realities of a life so young. It’s not always easy to recognize that as amazing as Cole is, there are going to be limits. Limits we intend to stretch and expand as much as possible to ensure that his life is rich and full, and that he’s the best Cole he can be, but limits nonetheless.

That’s when the tears flow…

KID

January 27, 2015 - One Response

My husband spent part of the weekend in Temecula with some of his coworkers to compete in one of those Spartan Races. You know, those obstacle, mud runs where you have to pass through freezing cold water, commando crawl under barbed wire, swing over mud pits and fling yourself up and over climbing walls all in the name of fun. It was his first time doing something like this and it was fun indeed. Challenging, grueling and fun. The whole group successfully completed the race, all without injury, and all leaving with a desire to do it again. But better.

I feel proud of him for finding a fun challenge that excited him and going after it. I also felt a little envious because I don’t often pursue the little things I might like to do for myself, or with friends. The Spartan Race is not my cup of tea, but there are lots of things that I’m keen to try or feel would be a fun activity. Childless activities. Yet, I don’t often allow myself the freedom to do so. My husband supports the idea of me taking a little “me” time, just as I encourage him to do the same. He’s just better at it than I am. I’m not sure why.

I had a brief conversation with a friend about this. She’s in a similar mindset. She’s happy to encourage her husband to enjoy a day of golf or whatever the pursuit may be, but is less apt to do the same. Both of our husbands travel so we each end up managing the family on our own at times. It would make sense to take a little time to ourselves to take in a movie, go for a hike, get a massage, or something random like a detox sweat (something I’m curious about) or shooting baskets at the park. Yet we rarely do.

For me, I feel a bit guilty about taking time away from Cole, even though he’s now at an age where he’s needing to take a bit of time away from me (from us) and is enjoying his own version of “me” time. He has so little time with me during the week due to my work schedule, so I feel like weekends are for him. The mom guilt tugs and pulls at me, and sometimes, he does too. I do know that he’s fine without me for a few hours, and that in the scope of a week, a month, a year, a life, a few hours to myself here and there are not going to have any kind of negative effect. More likely, those hours could have a positive impact.

This is something I need to improve upon. I am fine to make weeknight evening plans, like regular Mom’s Night Out dinners with my tribe, and board meetings for a non-profit I serve. Weeknight evenings are easier because if I go somewhere from work, I don’t have the influence of my son imploring me to stay home with him, and he doesn’t miss me much since he has his dad and weeknight routine. It’s the weekends, when a few lost hours would be most rejuvenating that I can’t seem to allow myself to stray.

I recognize the value of taking time to myself, both in terms of my sanity and my stress relief. I know it’s important to value yourself and to “put yourself on the list” as I often read. I know when I do make time for myself or follow through with things like taking better care of myself, I am happier, healthier and in many ways better equipped to share myself, my time, and my care with my son and my husband. I know all of this to be true, yet…

LOST IN THE SUPERMARKET (Series – 3)

January 26, 2015 - 2 Responses

I decided to try to make my own energy bars. I like the bars that are just dried fruit and nuts so it seems more economical to make my own, and it gives me the ability to design my own combinations. They’ll be great for mid-afternoon snack at work…a cup of green tea and a little bar make for a perfect afternoon pick me up.

Cherry Almond Date Bars:

1 cup of dried Bing Cherries
1 cup of raw almonds
1 ½ cups pitted dates

1. Throw everything into a food processor and pulse until it’s well incorporated. I left mine a little chunky in terms of the almonds because I prefer the bit of crunch from the nut as opposed to it being more a paste. You can do whatever pleases you.

2. Tumble the mixture into an 8×8 pan, pressing it so it’s flat and smooth. Cover with wrap and place it in the refrigerator for at least two hours to set. Cut into bars. Alternatively, you can roll the mixture into balls too if that’s more pleasing to you.

3. They’ll keep for about a week or two if stored in the fridge.

They came out really well. I love the combination of flavors and the simplicity of them. There’s just enough sweetness from the dates, complimented by the tart cherries and crunchy almonds. The bars are tasty and satisfying.

I think next time I make some bars I’m going to add a few other things. You need the dates to hold things together but you can play with the amount if want less sweetness, cut it back to one cup. Then go wild…try different fruit and nut combinations, add some granola or chia seeds, for more depth, add cacao nibs or cocoa powder, or a bit of almond butter for a creamier texture…you can even dip them in melted dark chocolate to make them feel really decadent.

I AM THE DJ (Series – 7)

January 23, 2015 - Leave a Response

Whoo Hoo!!! One week into January and Cole was ready to give up the holiday music. He’s listened to the Annie soundtrack quite a lot but mostly with my husband and he willingly gave Daft Punk and Panda Bear a try with the guys when they went to Santa Monica last weekend. And liked it!

With me his go to is Coldplay and Nick Waterhouse. I meant to create a new playlist for January 2015 on Spotify early in the month but am only getting around to doing it now. This month has soared by. Among the songs I’m going to introduce him to this weekend are the following eclectic mix:

1. Catfish & The Bottlemen – Kathleen
2. Ify Jerry Krusad – Everybody Likes Something Good
3. Vampire Weekend – Step
4. Tinariwen – Tenere Taqqim Tossam
5. Mitski – Townie
6. Stone Roses – Fools Gold
7. Wire Train – Chamber of Hello
8. Sleater Kinney – Fangless
9. Belle & Sebastian – The Party Line
10. Bombay Bicycle Club – Luna

IN MY ROOM

January 22, 2015 - Leave a Response

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!

YELLOW

January 21, 2015 - Leave a Response

When asked to describe my son on paper, he sounds pretty dire.

I just completed the required registration forms for his March ski adventure and had this realization. Most often, I think of him in terms of all that he does, all that he is. Inherently, I know he’s in a wheelchair, can only walk with support of an adult or equipment, requires special seating to keep him supported, is fed through a g-tube, and doesn’t speak.

These things are obvious but they’re never how I see him.

I like to tell him he’s my “yellow”. We both love that Coldplay song and while yellow is not a color I adore, in the context of the song, it’s a color I attribute to my boy. The stars do shine for him.

When I think of him I think of funny things he shares with me or of him skiing down a mountain, laughing or of him getting mischievous with my mom when we’re running weekend errands together. He’s just a boy like any other. Unique and perfect just as he is…

It feels strange to leave the description as simple as the diagnosis and challenges without adding all of the adjectives that I attribute to him when I speak of him or imagine him in my mind. He’s funny, smart, brave, and friendly.

He welcomes everyone into his inner circle and makes one feel content to be around him. He loves to dance, and goof around, and to make people laugh. He likes adventure and sports and isn’t afraid of doing things differently. His smile lights up rooms and his laugh can melt ice.

He’s so much more than anything I can describe on paper or with words.

IN MY LIFE

January 20, 2015 - Leave a Response

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.

LOST IN THE SUPERMARKET (Series – 2)

January 17, 2015 - Leave a Response

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…

LET’S DANCE

January 16, 2015 - Leave a Response

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…