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June 1, 2015
My husband and I have different opinions when it comes to alternative medicine or wellness. I have a higher interest and intrigue which he tempers with a big does of skepticism. With Cole’s surgery looming in the not so distant future (June 18th!), I find myself researching ways to make him comfortable both in the hospital and at home for the weeks of recovery. I’m also researching supplements that can help heal bone, joints and tissue, like tried and true Vitamin C, zinc, and bone collagen. I’m not a quack but I do believe that supplements can be highly beneficial. Where Cole’s concerned, my tendency is to be more conservative in my choices.
While I’m willing to try herbal concoctions and am happy to drink thick green things, I keep my research for him to things that have scientific evidence of enhancing healing. I just want him to feel okay, keep his immune system up and for the bones and tissue to heal well. I worry about this immune system because he’s going to be fairly immobile for nearly two months, which in itself is hard on any body. He’s used to moving around quite a bit and loves to stand and walk and move his body. Stagnant bodies are more susceptible to illness.
I’ve also stocked up on a lavender based sleep spray that Cole and I love. Hospitals smell so, so, well, so much like hospitals, and they’re anything but relaxing or calm. I’m keen to see if something as simple as aromatherapy can help him feel a little more relaxed at a time when he’s going to be anything but.
Because music is so important to Cole, I’m creating some playlists of favored songs with the hope that even if he’s drugged up and dozy, softly playing tunes that make him happy will promote some calm for him too. I’m hoping he’ll just be in the hospital for a couple of days. Home is a always a better place to be for healing.
That said, the same interventions will be useful at home, especially during the first week when pain management is the main focus. I’m hopeful that a peaceful, calm, softly fragrant home will feel nurturing and comforting to him. I sound like I’m creating a spa environment for him!
I guess in a way I am. I just want to make this major surgery as easy on him as I can in whatever small ways I can manage.
Posted in cerebral palsy, Family Life, Life, Special needs parenting | Tagged: cerebral palsy, Curiosity, differently abled child, family life, Healing, life, parenting | Leave a Comment »
Below are the songs for April and May. I lost my balance in terms of my writing these past couple of months. I’m working on getting it back so I can be more consistent with my writing moving forward. Discipline, discipline, discipline…
April 2015
The April songs and artists are below:
- WHY DO FOOLS FALL IN LOVE – Frankie Lymon & The Teenagers
- SUNDOWN – Gordon Lightfoot
- LOST IN THE SUPERMARKET – The Clash
- SUNNY AFTERNOON – The Kinks
- SHE BLINDED ME WITH SCIENCE – Thomas Dolby
- WHERE IS MY MIND – The Pixies
- I AM THE DJ – David Bowie
- VOICES CARRY – ‘Til Tuesday
- ME, MYSELF & I – De La Soul
- LET’S GET PHYISICAL – Olivia Newton-John
- ANNIVERSARY SONG – Cowboy Junkies
The May songs and artists are as follows:
- TALK TALK – Talk Talk
- MOTHER’S TALK – Tears for Fears
- SHOUT – Tears for Fears
- WHERE IS MY MIND – The Pixies
- WHEN I GET HOME – The Beatles
- LOST IN THE SUPERMARKET – The Clash
- TUESDAY MORNING – The Pogues
Posted in cerebral palsy, Family Life, Life, Music, Special needs parenting | Tagged: cerebral palsy, differently abled child, family life, life, music, parenting | 1 Comment »
Back to work following a lovely holiday weekend. Starting the week on Tuesday often feels harder than on a usual Monday. Having the one extra day of a holiday weekend is just enough to sink one into total relaxation, making the Tuesday start of the week a wee bit jarring.
For half the weekend we were three and the other half just Cole and I. Saturday night we had a delightful date night with a dear friend at a local café doing their first ever “Paella Night”. Seated outside under the glow of the local business signage eating a delicious Spanish meal with yummy vino and great laughter filled conversation. Nothing better.
Sunday Cole just wanted to lounge about in his p.j.’s until close to lunch time. Then we headed off to the last baseball game of his fall season with his friend Charlotte in tow. The game was festive and fun, and Cole and his pal Joshua had quite a cheering section between family and friends, and even a few of the school para-professionals all there to support them. Cole and Char then hung out together for dinner and watched Pitch Perfect to prepare themselves for seeing Pitch Perfect 2 on Monday.
Monday we lazily got ourselves ready for a late morning screening of Pitch Perfect 2. We met up with a few (okay, fifteen or so) friends for movie and lunch and got ourselves home just before four pm. Long fun day with a gaggle of our favorite people. Leaving us with just a bit of Monday left to have dinner, bath, neglect homework, and snuggle off to bed. Not a bad way to end a weekend.
So now I’m at work and our server is down so I’m unable to actually do any real work. Frightening how lost we are without our internet and server! My goal this week is to regain some consistency with my writing. Turns out it’s like exercise for me. If I get started and stay consistent I’m successful but fall off the routine for more than a couple of days and it’s all over. I really have to work on that with both writing and exercise!
Happy Tuesday…
Posted in cerebral palsy, Conversation, Family Life, Life, Special needs parenting | Tagged: cerebral palsy, conversation, differently abled child, family life, life, parenting | 1 Comment »
Last night I made one of my favorite pasta dishes for our dinner. It’s a pasta dish I’ve made for years and it varies from time to time but always satisfies. Happily, last night’s version made use of our abundant crop of swiss chard and zucchini! This is a sort of kitchen sink pasta dish. It’s healthy, forgiving and fast!
Whole Grain Pasta with Sausage & Greens
For two:
Pasta – I like this with penne but have done it with just about everything. Whole grain is best.
1/2 onion (any kind you have) – diced
Two mild Italian sausages removed from casing (pork, turkey, chicken – whatever you prefer or have on hand)
Two big handfuls of greens (Swiss chard, kale, spinach, super greens – again whatever you like or have)
1 teaspoon fennel pollen
1 teaspoon red pepper flakes
2 cloves of garlic – grated or minced
1/4 cup chicken broth, tomato sauce, or veggie stock
Salt & Pepper to taste
1 tablespoonish of butter (to finish)
While the pasta is cooking, add a tablespoon of olive oil to a skillet and add the onions and sausage. Saute for a few minutes until the onion soften and sausage breaks up into small pieces. Add the fennel pollen and red pepper flakes and stir to incorporate. Add the greens and whatever liquid you decided to use. Once the greens wilt, add the garlic, salt & pepper. Finish with the butter – it will slightly thicken the sauce. Toss warm pasta in the skillet and serve.
I like to have mine with a small handful of chopped walnuts and a little bit of goat cheese crumbled over. Dan prefers his with just a dousing of parmesan cheese. Last night we added zucchini to the mix too. (I added it just after the onions and sausage started cooking). I’ve also added sundried tomatoes too, which is a great addition!
It’s super easy and always very tasty! Definitely one my favorite weeknight pasta dishes.
Posted in cerebral palsy, Cooking, Family Life, Life, Special needs parenting | Tagged: cerebral palsy, cooking, differently abled child, family life, life | Leave a Comment »
I’m having a moment. A pouty moment where I wish I were somewhere else. Most of my company is in Cannes right now and I’m stuck here in my office.
I’ve been to Cannes more times than I can count and am grateful for all of the travel I had the chance to do in my early career. I am also aware that for the most part my colleagues are stuck in hotel room or apartment offices, working their asses off for ten or more hours each day, and excepting the gorgeous setting in the evenings and great dining, most are wishing they were back home with their families, pets, etc. Despite the undeniably gorgeous locale, working a film festival is not the same as attending a film festival. It’s not glamorous. It’s hard work.
But I haven’t been in a very long time and I see postings here and there of old friends enjoying rose at beach restos and random events and I find myself missing it just a little bit. So I’m here, drafting contracts, pouting.
The beauty of it is that I know that when I get home tonight, there will be a kiss waiting for me from my husband and a big smile from Cole and I’ll be happy I’m right where I belong, where I really want to be.
Posted in cerebral palsy, Family Life, Life, Special needs parenting, wanderlust | Tagged: cerebral palsy, differently abled child, family life, life, parenting, wanderlust | Leave a Comment »
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…
- Ways to Improve Your Child’s Self-Esteem
- Clinical Stem Cell Trials on Children with Cerebral Palsy
- The Moral Bucket List
- I love this idea! A compound of sorts…
- Anything to keep my mind sharp!
- Why Charlie, our cat, will be Cole’s best post-surgery nurse
Posted in cerebral palsy, Family Life, Life, Special needs parenting | Tagged: cerebral palsy, Curiosity, differently abled child, family life, life, parenting | Leave a Comment »
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…
Posted in cerebral palsy, Conversation, Family Life, Life, Special needs parenting | Tagged: cerebral palsy, conversation, differently abled child, family life, life, parenting | Leave a Comment »
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.
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!
Posted in cerebral palsy, Family Life, Life, Love, Marriage, Special needs parenting | Tagged: cerebral palsy, differently abled child, family life, life, love, parenting | 1 Comment »
(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!
Posted in cerebral palsy, Family Life, Life, Motivation, Special needs parenting | Tagged: cerebral palsy, differently abled child, Exercise, family life, life | Leave a Comment »
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?
Posted in cerebral palsy, Family Life, Life, Special needs parenting | Tagged: cerebral palsy, confidence, differently abled child, family life, life, parenting, Responsibility | Leave a Comment »
I love your brain 