WHERE IS MY MIND? (Series – 2)
May 18, 2015

I’m all over the place lately. Work is busier than ever. We have six films we’re preselling in Cannes, plus several others that have a lot of available territories that need to be cleaned up. No real complaints about there being a lot going on but my work days are full of work, and home is taken up with a somewhat needy Cole. I sometimes feel like when he has a lot of mom time (my husband has been traveling quite a bit), he then craves more mom time. I’m like a drug and he’s addicted!  Ha!  And there are still so many things catching my attention out in the world…

The following are some curiosities that have struck my fancy recently…

 9 ways stem cellsbrain commune

good habits nurse charlie

  1. Ways to Improve Your Child’s Self-Esteem
  1. Clinical Stem Cell Trials on Children with Cerebral Palsy
  1. The Moral Bucket List
  1. I love this idea! A compound of sorts…
  1. Anything to keep my mind sharp!
  1. Why Charlie, our cat, will be Cole’s best post-surgery nurse

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SHOUT
May 18, 2015

A continued frustration in our family is Cole’s unwillingness to step up his communication at home. He’s frequently moody and unhappy about his choices at home either during the early evening hours after school or on weekends when we’re trying to balance getting errands run, taking care of little home projects, homework, and fun. He’s often whiny and angry and rarely willing to take the time to try to communicate exactly what it is that is bothering him.

I understand that running to the grocery store and Target to stock up for the coming week is not the ideal way to spend weekend time for a thirteen year old boy. I do. I also understand that hanging out with your parents may not be the end all be all either. However, whining, teeth grinding, and angry grunts are no picnic either. The fact of the matter is that we’re frequently bound together on the weekends even for the fun activities and when one of us is non-communicative weekends often become unpleasant.

The frustration for Dan and I is that Cole has means to communicate, beyond his ability to convey things without words, he has his Tobii (eye gaze voice output device). Of course, he refuses to use Tobii at home. I don’t know if, by the weekend, he’s just cooked from the effort output all week at school, or if he’s just stubborn. Well, he is stubborn, but I’m not sure about in this circumstance. The trouble is during the weekends, he also boycotts answering questions even those requiring a simple yes or no, two words he’s mastered.

His refusal to communicate makes all of our home time more stressful and anything but relaxing. It makes everything we attempt to do somewhat unpleasant. Even when we successfully do something fun or accomplish an errand without this behavior, it reappears as soon as we leave something and head home. It’s like he hates home, except I know that’s not the reality. I understand he’s sometimes sad that something is over, but it doesn’t warrant the behavior. We try so hard to illicit answers and to try to make things all right, but lately it rarely seems to work.

Nothing is more heartbreaking than seeing your child unhappy, and nothing is more frustrating than seeing that he’s not willing to help himself. His stubbornness and misery get in his way and he just can’t seem to shake it. I don’t know if it’s a teen topsy turvy mood thing or if it’s more endemic than that. I wish he would let us in on the secret. I wish he would trust that if he tried to communicate with us we’d listen.

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MOTHER’S TALK
May 9, 2015

It’s Mother’s Day this Sunday and I’m looking forward to a relaxing weekend with Cole. My husband has gone to Hawaii to spend the weekend with him own mum so Cole and I are on our own. It’s been that way for most Mother’s Day as my husband used to attend the Cannes Film Festival and was always in France come Mother’s Day. I’m not bothered by it since Cole is who makes me a mom.

We’re looking forward to a really relaxing weekend together. The weekend starts a little earlier than usual since I’m on pickup duty. Cole and I are planning to hang out with my mom tomorrow. He needs new eyeglasses and is keen to have her help him decide on a pair, and then we’ll probably lunch. He wants to spend the afternoon just kicking back at home. Sunday he’s taking me to a matinee of the Ultron Avengers movie…and then we’re meeting up with extended family for dinner. A weekend of fun, and nothing. Perfect.

I spent last weekend in La Quinta with four other moms. Our second moms get-a-way. A few years ago a few of us went to New York to support one of the tribe who spent the summer acting in a play, and then this desert weekend, where we intended to do this and that but actually ended up mostly finding ourselves engrossed in conversation, after conversation…oh, and some nice meals and vino. It was a perfect segue way into this Mom’s day weekend.

I’m blessed to have a tribe of women who I can get lost in conversation with and find myself standing taller afterward. I find myself in awe of so many amazing moms I know. We all share the goals of providing our children with the best tools we can. We share the hope that our kids will be kind, strong, generous, bright, respectful, interested and interesting. We foster independence, self-reliance, and self-respect in our children. We love unconditionally, challenge, and support our kids whole-heartedly. We have ready hugs when needed, and are learning when to give space. We share our trials and tribulations and successes with the hope of being inspired, supported or educated by one another. As I said earlier, I am blessed!

photo-2 1149013_10201742605916075_2092457149_n Me & My Mom (1969)

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Here’s to all of the amazing moms, mine included, in my life. Happy Mother’s Day to you!

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TALK TALK
May 4, 2015

I had a realization this past weekend that I’m not entirely proud of but so relieved that I had it. One of those reflective moments where you suddenly realize “Oh, wow”…

My husband was traveling a few days this past week and I handled the driving Cole to and from school duties. I was lamenting the morning drop off because my observation of them was that (besides Cole being terribly embarrassed to have his mom bring him into school – typical teenager!), most of the kids just sort of ignored him as we pass by or settle near his classroom waiting for his para-professional to arrive and take over. It’s like they just don’t see him.

So I was discussing this with some friends over the weekend, expressing that it really saddened me when I realized that Cole sort of ignores everyone else too. He’s not engaging them in conversation or saying “Hi” to any of them despite having the ability to do so with his Tobii. He has a voice that he often neglects to use and conversation is not something that he needs to be dependent upon others to start. In fact, it should be something he’s doing more often. He needs to be engaging his friends with interest and query. It’s not their responsibility to always come to him and ask him questions without reciprocation.

As much as I hate to admit it, but it’s so easy to see your child as the one left out because they’re different, and admittedly it does make it harder for others to engage with him, but the reality is he also has to show he’s open to conversation and interested in others as well. It’s not something we’ve fostered or a skill he’s strongly developed because, cringe, we were focused on why others weren’t engaging him. I’m grateful that light blub turned on and that it’s now something that Cole can work on developing stronger conversational skills and understanding.

I feel like by him initiating conversation or simply greeting friends and teachers when he sees them as opposed to silently rolling by, he will open himself up to more positive and intention interactions with people, and will deepen friendships by actively showing greater interest in his friends. He can’t be reliant on them to be the sole conversant. The reciprocal conversation is so much more satisfying for everyone.

I need to be turning that mirror on my boy and myself a little more often…

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ANNIVERSARY SONG
April 22, 2015

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Today is my fifteenth wedding anniversary. We’ve been a couple for seventeen years. Almost a third of my life…Before Dan the longest relationship(s) I had been in lasted no more than two years, and ours is in many way the most challenged. The divorce statistics for couples with special needs children are pretty daunting. Something like 80% to the national average of 45%. I’d say we’re doing pretty damn fine!

The past fifteen years have not always been easy and there have admittedly been times when it felt like the best thing to do would be to throw in the towel but the love has always been there, even when we haven’t liked each other very much.

I’m a handful. I admit it. I can be very hard on someone who disappoints or angers me. I also have a tendency to lash out and be hurtful, especially with my husband who is the unfortunate recipient of my foulness no matter who or what the cause. He has the pleasure and sorrow of being the one closest to me, and the one who is around me the most.

The pay off is that I’m more often sunny and pleasant. He actually thinks I’m funny and tolerates my singing, which even my son refuses. We’ve had to endure a lot of stresses over the years, most notably the birth of our beautiful boy, our attempts to navigate the world of special needs parenting, and everyone’s favorite, finances. But we’ve managed to come together more often than not and work well together. Our strengths compliment one another making us a force to be reckoned with. Our journey has been unexpected and bumpy but always with an underlying current of love running through it.

We plan to celebrate rather simply because it’s a hectic time workwise for both of us and a Wednesday (not as fun to do late night celebrating on a weekday!), but, because it’s a rarity, the idea of sitting across a restaurant table from my husband, sharing wine and nibbles is heaven.

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Rather than one single grand gift, I decided to go with the 15 theme…Fifteen assorted prezzies! They range from a CD with 15 songs that remind me of him to a bag of what he claims is the best coffee he’s ever had (James Coffee Co.) to a Replacements t-shirt (we saw them the other night and he commented that he realized he didn’t have one of their T-shirts despite them being one of his faves) to 15 photos from our wedding that I created an album for to a chocolate croissant (his favorite) from a great bakery near my office to start the day on a sweet note. The process of coming up with the ideas and the different fifteens (like the songs, pictures and things I love about you list) really put me in a frame of mind of recognizing how blessed we are and of how much I love him.

Nothing crazy, but hopefully things that say “I listen, and I hear you”…Here’s to the next fifteen, Darling.  I can’t wait to see what is yet to unfold!

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LET’S GET PHYSICAL
April 20, 2015

(An obvious song choice but how I could I not?)

Finding time to exercise is a chore. I’m not inherently disposed to love exercise, although I really do enjoy being physical and moving my body. I just have to find the right mix of good workout, interest and perhaps passion. A friend I know loves yoga and dance, and looks forward to her classes as they bring her joy. Physical movement and challenging your body and mind kind of joy which to me is a great thing and I wish I could find the class(es) or activities that could bring this to my life, and that I can actually fit into my daily life.

I know a lot of people struggle with this. In the realm of life, we all know we need to exercise and that it’s something that we should prioritize in our daily lives in order to maintain good health and sanity. I know this. I know this. I know this.

But I can’t manage to do it.

I took What’s Your Fitness Personality, an online quiz I found that resulted in me being a “seeker”. My results suggested that I pursue running, walking, weight training and martial arts. Apparently I’m goal driven and self-motivated. I have both of these traits in life, but not when it comes to setting fitness goals and self-motivating my ass out the door to workout.

I’m not a runner, though I do imagine myself running from time to time. It’s a workout that I know I could fit into my weekday because I can do it in my neighborhood, before or after work, and it doesn’t require equipment or cost. I actually want to like running but again struggle with starting it.

Given that I’m (allegedly) goal driven, I found a couple of online routines that promise to take you from zero to running 30 continuous minutes in eight weeks, and a six week training program that takes you from zero to running a 5K. Both seem reasonable and both interest me. Running for 30 minutes straight seems like an achievable goal, as does training for a 5k. Reaching one or both goals would be empowering.

But no one tells you how to push yourself out the door on that first day…HELP!

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ME, MYSELF & I
April 16, 2015

Recently my frustrated husband had a conversation with Cole where he told Cole that he was behaving like a selfish child and that he was only thinking of himself. It got me thinking and I realized that in many ways it’s true, he is selfish. It also made me wonder if this is something that is common amongst kids with special needs. By nature of their condition(s) they require additional attention and care, sometimes at the expense of someone else’s needs. It’s just a reality of their lives.

I don’t think that Cole is inherently selfish or narcissistic but I think it’s hard to not exhibit these tendencies when you’ve had people (your parents) basically catering to your every need for your entire existence and bolstering your self-esteem at every opportunity. Because he isn’t physically able to provide some of the niceties or support or even comfort, he’s not really developed a strong means of expressing empathy, sympathy or emotions using other tools. The toll of some of his brain injury also makes it hard for him to completely have a handle on his own emotions or his interpretation of other people’s feelings.

At the heart, Cole is a loving, kind kid but some of his behaviors feel manipulative and selfish. He doesn’t often recognize the impact his behavior, especially bad behavior, has on the other people around him. He’s not prone to big tantrums or anything that dramatic especially in public, but he does express anger and frustration with some choice actions like teeth gnashing, biting, and striking out with his arms or legs, often directed at his dad and me. It’s not pretty and it’s not something we condone but it’s also not something we’ve yet figured out how to maneuver. Punishment doesn’t serve us well because he doesn’t care to associate the punishment with his action.

Sometimes his lack of recognizing that there are other people who likewise matter simply translates into outright rudeness. We might be on the phone with his grandparents and when he tires of the conversation or feels ignored, he reacts with frustration by grinding his teeth and vocalizing by shouting or whining. He’s unwilling to accept that not every conversation will be about him or will interest him.

I can’t help but wonder if this something we haplessly fostered. All children become the center of their parents universe, but when you have a child who needs you for everything, the tendency is to pour everything into them and unlike typical children, who gradually become more and more independent, your child continues to need your dedicated attention, which can also be a source of frustration in their own desire for independence. You want to make their lives as rich and full as possible, and you want them to feel loved, cared for, and empowered. But where is the balance?

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VOICES CARRY
April 13, 2015

Navigating the world when you can’t speak is tricky. In order to share your needs or to participate in conversations or activities you need to rely on others paying a modicum of attention to you, which is not under your control at all. I see the frustration and sadness in Cole sometimes when people, sadly, including myself, don’t notice he’s trying to express something or vying to be a part of a group conversation.

When he was small, it felt natural for one of us to sit near him so that we could facilitate his inclusion a bit. Most younger children have their parents close even when they’re socializing with other kids. Now that he’s a teen, and going to parties and outings where his friends are dropped off and on their own for the most part, it’s a different scenario.

He doesn’t want to be the only kid with a parent around, and if there is a parent around, he definitely doesn’t want them in the thick of things helping him be part of the group.

But he’s not able do this successfully on his own and friends can’t be held responsible to include him or to make sure he’s an active part of the festivities.

I’ve written about this before but I’m grappling with it because I see him left out of conversations more and more and I see the effect it has on him. And it’s not anyone’s fault. It’s sadly just a reality of his circumstances and I struggle with how to make it better for him.

I don’t have any great solutions and the tough love part of me feels like he needs to accept some of the responsibility in it. He has a communication device that he uses at school, but that he most often refuses to take with him anywhere during the weekends. I understand some of his reasoning as it’s rather large and blocks him from view from people a table, and also blocks everyone else from his view. Not ideal, but it gives him a voice and a means of including himself in conversations, and initiating them too.

The nurturing part of me wants to hire a peer to support him and facilitate his participation. A peer, as opposed to the adult support we do often hire, at least is part of the action too. It doesn’t seem as obvious as having an adult with him. But it feels a little like paying someone to be his friend, and that feels terrible. He’s got great friends who adore him and do their best to include him.

It weighs on me because there’s not really a great solution. He’s got a big 7th grade night time party this weekend that he’s so excited to attend, which is why this is on my mind. I just want it to be everything he hopes it will be…I know I can’t be there to make sure it’s a good experience so it ruminates in my head…If I could change anything for him, it would be to give him his voice…the impact of him having the ability to speak would change everything for him. More so than walking, or eating, or having better motor skills. I’d give anything to hear his voice.

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WHERE IS MY MIND (Series – 1)
April 10, 2015

I am a magazine junky. There, I’ve come clean. As much a I love to tuck into a great novel, and do read on a nightly basis, I love the immediacy and compact nature of magazines. I can pour through a stack of them at my leisure and pick up all kinds of information, some necessary and some trivial. They delight me.

Over the past several years, I’ve trimmed down my paper subscriptions, opting for online versions as well as some online magazines like Chalkboard, Huffington Post, Green Monster, Food 52 and The Skimm. They serve my curiosity and fit in well when I only have a short time to play. I also love the ease of Googling anything that strikes my fancy (you don’t want to see my history – it’s a plethora of weirdness) and to find lots of information about everything from recipes to adaptive seating to best red lipstick shades to accessible travel to the latest in Swedish design. Right now I’m a bit obsessed with researching stem cell treatment.

And don’t get me started on Pinterest! Before Pinterest, I would tear or cut out articles, pictures, recipes and more out of magazines and newspapers, sticking them into files that I rarely looked at! With Pinterest, I save everything and anything and I do actually use my Pinterest files. I can take haircut ideas to my stylist, search for cool light fixtures for my dining room, track ideas for our 2016 trip to Paris, pull up recipes I’m keen on, and more, more, more…without clutter!

So here are some things I’ve found intriguing recently…places my mind has gone wandering:

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  1. 16 Party Bar Ideas Because I love entertaining and doing a festive bar is a fun way to let your guests DIY
  2.  Fascinating – What Your Eye Color Says About You
  3.  This sounds like so much fun – Shooting Hoops
  4.  Sara Gottfried – I am so looking forward to reading her new book about managing hormonal influences with diet
  5.  Contemplating this a means of storing all of our photos and documents: Bevy
  6.  For the lo-tech people like me who could use a little help: 20 iPhone Hacks

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I AM THE DJ (Series – 10)
April 9, 2015

I’m looking forward to a few days of “Mom & Cole” time. Dan’s doing a conference this week through Saturday and has benefit to attend Saturday evening so we won’t see him until Sunday. Cole’s is continuing with Spring Break camp this week, which he seems to enjoy. A couple of his pals are there this week who were not last week so they’ve helped to make the week a bit more fun. I try to leave work a little early when Dan’s away so I can be home at a reasonable hour to have dinner with Cole. We fall into an easy routine of dinner, bath, a little TV. We have The Voice recorded so we’ll most likely watch the lives together.

Saturday we have some important errands to run. He’s attending a birthday celebration for one of his favorite friends and has decided on a gift so Saturday is shopping day! I’m guessing we’ll rope Grandma into joining us for a little shopping and lunch. Cole loves his weekend outings with her (so do I). I’m working a playlist for our driving. It’s kind of an esoteric mix but there are definitely a few songs that I know he’s going to love, and few that may surprise me. I just keep trying to keep us listening to different kinds of songs, old and new…just not the familiar kiddy music…anything but that!

So here’s the start of the April Playlist…

  1. ELEPHANT STONE – Stone Roses
  2. NO MYTH – Michael Penn
  3. STRANGE CONDITION – Pete Yorn
  4. GET CLOSER – Life in Film
  5. MAN WITHOUT A DREAM – The City
  6. GIMME SOME LOVE – G. Love & Special Sauce
  7. PINK MOON – Nick Drake
  8. I WANT YOU TO WANT ME – Cheap Trick
  9. EX’S & OH’S – Elle King
  10. CASTINADES EN EL GRANERO – Hinds
  11. CRAZY FOR YOU – Scars on 45
  12. DARK SUNGLASSES – Chrissie Hynde
  13. COMMON PEOPLE – Pulp
  14. PEDESTRIAN AT BEST– Courtney Barnett
  15. PICTURE THIS – Kero Kero Bonito
  16. WORLD SHUT YOUR MOUTH – Julian Cope

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