Archive for the ‘Life’ Category

THE LAST SONG (Series – 2)
February 1, 2015

I’ll try to do this at the end of each month. Although the first post was mid-month, and included everything to date, this one is just January so there may be some duplicates. From here on out however it will be monthly listings. I’ve come to realize that songs filter through my head constantly. Someone says something and it triggers a song in my head or I notice something that peaks my interest and a song too accompanies it. The same happens with the naming of each post. Most often as I’m writing the song is revealed. Sometimes I have a song title that actually informs the post too.

1. NEW YEAR’S DAY – U2
2. LOOK AT GRANDMA – Bo Diddley
3. WHEN YOU’RE NEAR ME I HAVE DIFFICULTY – XTC
4. SUNDAY MORNING – Johnny Cash
5. I AM THE DJ – David Bowie
6. BLUE CHAIR – Elvis Costello
7. I READ A LOT – Nick Lowe
8. THE LAST SONG – The Foo Fighters
9. LOST IN THE SUPERMARKET – The Clash
10. DON’T STAND SO CLOSE TO ME – The Police
11. WHEN I WRITE THE BOOK – Nick Lowe
12. ALL BY MYSELF – Eric Carmen
13. LOST IN THE SUPERMARKET – The Clash
14. IN MY LIFE – The Beatles
15. YELLOW – Coldplay
16. IN MY ROOM – The Beach Boys
17. LOST IN THE SUPERMARKET – The Clash
18. KID – The Pretenders
19. DON’T STOP ME NOW – Queen
20. ELEANOR RIGBY – The Beatles
21. ALL YOU NEED IS LOVE – The Beatles

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ALL YOU NEED IS LOVE
January 31, 2015

I read an interesting article today. A woman, who has a son with cerebral palsy, was addressing a group of eighty or so physicans, speaking from the parent perspective of what it’s like to raise a child with special needs. There was a Q & A session after her talk and one of the doctors asked an intriguing question. It’s actually a question that could apply to any parent, but in some ways is more pointed be posed to a parent of a child with disabilities.

The question was, “What do you wish you had known, or had been told, when your child was born – and what would advise someone just starting out on a similar kind of life to yours?”

As parents to be we get all kinds of advice from all kinds of different resources but I can say from pre-parent experience, no single piece of advice I received could have prepared me to the parent of a my son. I didn’t have any friends who had children with special needs. I knew a few people who had children on the spectrum, which is its own set of challenges, but none with kids who had involved physical needs like Cole.

You jump in. It’s terrifying.

Cole was in the NICU for five weeks. During the first couple of days, we relied on the tremendous NICU nurses to guide us. Once he was at a point where we could handle him a little, albeit still connected to a barrage of tubes and wires, we were encouraged to hold him, and even change his diaper. It was pretty crazy but at the same time, it was what new parents should be doing so it felt empowering and connective.

The NICU nurses were the ones who taught me how to use the hospital grade pump so I could express milk for Cole. (Fearing for the worst, the hospital breastfeeding coach avoided me so I initially thought I wasn’t going to be able to provide breast milk for him). Knowing he was being provided good nourishment made me feel connected to him too, even if he was receiving by tube, not boob. And it too felt like something typical moms would be doing.

We were fixtures in the NICU those five weeks. We’d go home to sleep and shower and return to spend the day with Cole. During those weeks we learned a lot about him and about some of the considerations we had to make when he came home. The NICU nurses armed us with confidence that we could manage this on our own and a “just do it” kind of ethos that we still take to heart.

We got home, we fell into a crazy routine between tube feedings, pumping, and trying to sleep, my husband and I moved through the next six months until Cole was sleeping through the night and on a more regular patterned feeding schedule. I stopped pumping, having well stocked the freezer with enough milk for a few additional months…and we started to breathe. We were parents. We had an amazing child who brought joy to our lives.

I don’t know if any specific advice could have actually prepared me for being his mom had I known he would be different before he was born. I feel like knowing this would have made overthink everything, rather than letting things flow organically.

If I were to give someone who is starting this journey advice, it would be to breathe, listen to your heart, and to love unconditionally. Embracing the joys makes the sadness and fear fade.

Throughout my journey, one gift I’ve found more valuable than anything is the community we’ve built. There’s great collaboration, advice, and support. More than anything, there’s understanding, acceptance and love.

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ELEANOR RIGBY
January 30, 2015

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…

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DON’T STOP ME NOW
January 29, 2015

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…

Posted in Family Life, Life, Middle School, Motivation, Optimism, Special needs parenting | Tagged: , , , , , , , | 1 Comment »

KID
January 27, 2015

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…

Posted in Family Life, Life, Resolutions, Special needs parenting | Tagged: , , , , , | 1 Comment »

LOST IN THE SUPERMARKET (Series – 3)
January 26, 2015

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.

Posted in Cooking, Family Life, Life, Resolutions, Special needs parenting | Tagged: , , , , , | 2 Comments »

I AM THE DJ (Series – 7)
January 23, 2015

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

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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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YELLOW
January 21, 2015

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.

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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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