SUNDAY MORNING

January 4, 2015 - Leave a Response

The Sunday before the end of two weeks off work and school…There’s competing desires to indulge in utter laziness and to end the break feeling accomplished and productive.

Thus far, the laziness is winning out although we’re into the second load of laundry and the boy has had a mani-pedi to get ready to return to school well groomed. (it’s only just 10:00 am and we didn’t get out of bed until 8:30 so maybe we’re slowly moving towards productivity).

Today is intentionally plan-free. No one in the family seems to be excited about the prospect of returning to the work/school routine, although I suspect that a day or two into the routine, we’ll all be happier. Much as I love having time off and enjoy the time together, it can be challenging to find things to do that satisfy everyone, unless there is some travel involved, which unfortunately was not the case this holiday season.

There are lots of things to get organized for both the boy and myself. I’m preparing some healthy, easy snacks for the work week, have to pack up my new under the desk elliptical machine, along with some new note books – an effort to stay on top of everything – and making sure I have a plan of action for the day. Two weeks off means a lot of catch-up, even with most of my industry being off too.

We also need to get the boy organized for the return to school. That means sorting through the backpack and binder and making sure everything’s current and any outstanding assignments are complete, packing up supplies for the week, and resetting the general mindset from vacation to school. That’s the trickiest part. The school year has been a bit rough so he’s no longer excited and eager to return to school – a first for him. Until this year, he truly wished he could live at school. He loved it that much.

More laundry, quick errands run, and we’re once again back home and trying to motivate to get the random things handled. Why is it that after having two weeks of holiday, this final day is the day when everything seems hard to do? It’s that dragging one’s feet thing, hoping to eek every last second of holiday out of the day. We can’t even motivate to take down the Christmas stuff. That will wait until next Sunday…

Categorized in Family Life, Life, Motivation and Special needs parenting
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WHEN YOU’RE NEAR ME I HAVE DIFFICULTY

January 3, 2015 - Leave a Response

Cole is prone to startle triggered seizures, which had him on preventative mediation nearly from birth. There were a few childhood years where he was weaned off the phenobarbital and medication free but a few years ago he had a new kind of seizure that had him still seizing when the paramedics arrived about six minutes after our call to 911. We’d never seen him seize like this and fear got the better of us.

His neurologist put him on a new medication, Levatrice, which seemed to help prevent the seizures entirely, for a while. It seems with the onset of puberty, and the hormonal changes that come with it, as well as general growth, the seizures are back as a regular thing. The school bell, our dog barking, and, more frequently than I like, my voice, when loud, calling from another room are regular triggers for the startle seizures.

Though recently, the seizures seem to have changed somewhat, evolved. The usual manifestation of his seizures involves his body freezing, seizing, with his arms a bit twisted and his face frozen in what looks like terror, and then it’s over. Now once that phase passes, there is an addition of fluttering eyes and mouth for an extended period of a minute more.

The seizures frighten me. I know that they are largely harmless, and that he has little awareness of them occurring, although he does show signs of acknowledgment before they happen sometimes. However, I also know that there have been instances when seizures have been fatal to teens with cerebral palsy. When Cole has a bad seizure, his face goes pale and cold within seconds of its onset. It scares me but I can’t let on him to that anything’s off. I usually try to maintain continuity in whatever was happening before the seizure so when he comes out of it, he’s just where he left off.

We’re again at the point where I think we need to strategize with his neurologist to see if there’s a different medication that can help quell the seizures. I think he’s at the highest end of the recommended dosages for this medication. He’s perhaps outgrown it. I’ve hoped he’d outgrow the seizures entirely, but it seems like he’s instead growing more into them.

Categorized in Family Life, Seizures, Special needs parenting and Teenagers
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LOOK AT GRANDMA

January 2, 2015 - Leave a Response

Cole and I spent the day with my mom today, just running a few errands and then taking her out to lunch. We often do this on the weekends and it’s become something both Cole and I really treasure. I love that he is able to have the opportunity to spend time with his grandma and to make memories with her. It’s easy to take it for granted but I think he values the time with her dearly.

For the first half of his life, she lived in Oregon and would come down to visit several times a year. She moved back to Los Angeles about five years ago and we’ve since grown into the routine of seeing her during the weekend. Usually, as with today, running errands and lunch. Nothing particularly special about the outings, but it’s time that is absolutely cherished.

Cole adores her and she him. They both delight in wandering away from wherever I am and getting into their own form of trouble. Cole has made it clear that in these weekend outings, I’m merely the chauffer, getting him to Grandma and responsible for taking care of the necessities. She’s the fun. It tickles me to no end that they have their special time. There’s nothing like Grandma time.

Categorized in Family Life and Special needs parenting
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NEW YEAR’S DAY

January 1, 2015 - Leave a Response

I welcome the new year whole heartedly. I often feel ambivalent about new years and the concentration of attention on resolutions and change. However, this year, I find myself embracing the opportunity to implement some changes, updates, and upgrades into my life.

2014 was a fairly good year. We did a little traveling – I finally saw the spectacular beauty of the Grand Canyon, spent a lot of quality time with friends and family, did a few impactful updates to the house that have made it a space where we enjoy our downtime, as well as entertaining friends and family, overall the work year was solid, and Cole has grown in ways that still surprise us – his new found desire to spend time alone in his room in typical teen fashion…wow!

With the advent of the new year, I have the urge to continue to become healthier. Thus far, that includes the purchase of an under the desk elliptical machine, as well as a standing desk so that my normally sedentary work day can become a more challenging to me physically.

I’m also keen to explore some new recipes to add grains and more fruits and veggies to my diet, and eliminate some of the processed products as well as sugar. Sugar seems to be the evil element as we age, not only internally, but it also ages our skin more rapidly. I still have weight to lose (managed to lose and keep off 23 pounds in 2014…hoping for more of the same in 2015), but overall wellness is my main reason for updating the meal plans. I can feel the difference in my body, well being and energy when I’m eating cleaner, and leaner. My immune system is stronger and my moods more stable.

Having a living, breathing backyard garden is something that will help with that. We built some raised beds last year but have yet to fill them with soil so we can start planting. 2015 promises to be the year of getting our gardening on. We’ve grown veggies in pots and various spaces in our yard over the years and have been inspired by our homegrown crops to create wonderful meals from our produce. To be able to have a seasonal selection of crops to be inspired by is a dream. And the idea of tending to and nurturing them strikes me as a wonderful way to relax and spend a little time outside (I’m in an office all days with minimal outside exposure during the week).

I’m also looking forward to experiencing Cole growing. He seems to be in a physical period of growth at the moment. The last couple of weeks of 2014 have had him sleeping a lot more than usual and also a bit grouchier. Both signs of physical growth. I’m interested to see how he expands on his independence and to see how his interests grow this year.

Of course there are countless other upgrades that I hope to make practice of – being better organized, being more thoughtful and kinder (especially to my husband who has the unfortunate brunt of my moods whether he deserves it or not – most often not), reading more, revitalizing my French (we intend to take Cole to Paris for his 8th grade graduation), writing more, being braver about putting myself out there (where exactly there is, I’m not sure, but I know I’m not there, yet)…

I am entering 2015 with optimism, hope and an overall sense that the year will be meaningful. To me, that includes some real change and overhaul.

I wish health, happiness, and hope to everyone in 2015. And a good dose of love. It makes everything feel that much more attainable. Happy New Year’s!

Categorized in Family Life, Optimism, Resolutions and Special needs parenting
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MERRY CHRISTMAS EVERYBODY

December 24, 2014 - Leave a Response

For us, today is the day. It’s Cole’s favorite holiday of the year, perhaps his favorite day of the year. It’s also the most trying day because the anticipation of the evening (our Christmas Eve festivities begin at 5pm) has his every emotion heightened and his patience limited. Did I say limited? Non-existent would be more accurate.

Despite having celebrated Hanukkah with family, and his cousin’s birthday with family, as well as some other fetes, it’s all about tonight. Nothing compares to Christmas Eve at Uncle Dennis’.

I love that he finds it so joyful and that he loves it so much. I wish I could share just a speck of the delight he finds it with all of you. His happiness continues through into the New Year, which always makes the start of the year hopeful and bright.

With that in mind and heart, I wish all of you a bright, shiny New Year and much love during the holiday season.

Categorized in Christmas, Family Life and Special needs parenting
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WHEN YOU WERE YOUNG

December 17, 2014 - Leave a Response

I’ve heard that we tend to maintain a connection to the music and memories that informed our high school years. I have to admit that to a great extent, I find this true. I’ve moved on from those days but I do have a certain affinity for the music of my youth and am known to blast late 70’s , early 80’s punk and new wave music in the car, dancing and singing along, especially when I’m stuck in traffic and need diversion or when I’ve had a particularly stressful day. Nothing blows off steam better! I also have cherished memories of those days, and am still close to my group of friends from high school (and even elementary school). They know me in ways that no one else will know me. Growing up together creates a bond unlike any other.

I spent my youth in nightclubs dancing or seeing live music. Quite literally, for many years, several nights each week were spent doing one or both. I started seeing bands when I was fifteen, just getting into the punk scene. Stolen nights at the Starwood, Whiskey, Godzilla’s, Cathay de Grand, Madame Wongs, Al’s Bar, and many other long forgotten venues. When there wasn’t a good show on a given evening, dancing was the substitute diversion. I spent happy nights dancing with my girlfriends at clubs like Glam Slam, Phases, the Odyssey, Dirt Box, Scream, Seven Seas, Power Tools, and countless random warehouse pop-up clubs that would appear from time to time. Nightclubbing in that era was amazing. There was always something fun to do around music.

If feels like life is so different for teenagers now. Besides Cole and his friends, I have two teenaged nieces. Their lives are so focused on school and outside interests, mostly volleyball for all of the girls, which takes up any spare time, including most weekends. There seems to be little time, or interest, to delve into frivolity that my peers and I enjoyed.

Life seemed so much simpler, and freer when I was growing up. We didn’t have the constant electronic distractions or exploitations (thank god!) and we didn’t have the same need for immediacy. We also weren’t as driven. Life has become more and more competitive for children and teens. It’s harder to get into schools, from the elementary level up, and it’s harder to find decent starting jobs. The focus on future starts much earlier in their lives now, and is taken far more seriously than when I was a teen. We seem to have had greater balance in our lives and the pleasure of conversation and interaction that seems to be missing from so many kids lives these days.

Wow…I sound old…considering back in the day kind of conversations…except now I’d have to text them to youth in my life because they don’t seem to like to talk face to face or on the phone…

Categorized in Family Life, Special needs parenting and Teenagers
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ALL I WANT FOR CHRISTMAS IS YOU

December 16, 2014 - One Response

Selecting presents for my son is one of the most frustrating quandaries I face each birthday and holiday season. He’s never been very interested in toys, and even less so now that he’s officially a teenager. Electronics are tough because they need to motorically accessible to him and most are not. He’s happy enough with gift cards and the random clothes and accessories, but it never seems satisfying as the gift-giver.

I scour the internet and accessibility/special needs catalogs in hopes of finding the unique items that elude me in local shops and stores. Some things seem too therapeutic and others seem too young or not quite fitting of his age.

While he likes science, I’ve learned from experience that he’s less inclined to want to do science projects at home with his parents than he would be with friends or at school or camp. He likes music, but with nearly anything he wants to listen to available for free on Spotify, CD’s are kind of passé, and the same goes with the availability of most movies and television shows on Netflix, Amazon Prime, or iTunes.

I love the tangibility of an actual book, but for him electronic books and audio books are more readily accessible and manageable for him. He’s got more art supplies than he’ll ever need and his room is well appointed. Which leaves the question nagging evermore…What to get the boy for Christmas!?

Categorized in Christmas, Family Life, Special needs parenting and Teenagers
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I AM THE DJ (Series – 5)

December 12, 2014 - Leave a Response

I think I’ve mentioned that Cole loves Christmas. Particularly, Cole loves Christmas Eve at my brother’s house. My brother and sister-in-law started what has become a family tradition celebration of Christmas Eve. My brother loves Christmas, a love inherited from our mom, and he set out to create a wonderful family night for his two girls and for all of the extended family. It’s truly a special night and I don’t think any of the kids (all now teenagers) would trade it for anything. Especially Cole.

The evening’s events unfold almost exactly the same year after year (running on more than ten years at this point), and any deviation would be noticed, and corrected, by all of the kids. It’s successfully a warm, festive, thoroughly enjoyable celebration each year, and the one day Cole looks forward to more than any other, even his birthday!

Besides his love of Christmas Eve, Cole’s other favorite wintertime passion is holiday music. He’ll take it anyway he can. He’s even sat through Americana Christmas, listening to the likes of John Prine and Emmylou Harris (both talents but not generally in his wheelhouse of musical interest. Here are few things we’ve had on playlists this week:

1. Weezer – Oh Come All Ye Faithful
2. Bad Religion – Little Drummer Boy (Really, any of their holiday songs are great!)
3. REM – Deck The Halls
4. The Eels – Christmas Is Going To The Dogs
5. Pink Martini – Santa Baby (One of my favorites – especially Eartha Kitt’s version)
6. Smashing Pumpkins – Christmastime
7. Fitz & The Tantrums – Santa Stole My Lady
8. Dean Martin – Let It Snow
9. Ray Charles – Rudolph The Red Nose Reindeer
10. Oasis – Merry Christmas Everybody

One on going, pretty much love from start to finish is last year’s Michael Buble Christmas album. That, and Bad Religion’s holiday album, also released last year. Both are pretty great!

Categorized in Christmas, Family Life, Special needs parenting and Teenagers
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I’LL STAND BY YOU

December 11, 2014 - One Response

Cole’s having his biennial colonoscopy, upper and lower, on Monday. Besides his diagnosis of cerebral palsy, he has Crohn’s Disease. He was diagnosed when he was about three years old after a bout of a bad breath eventually led us to our GI for testing. Crohn’s is an autoimmune disease that effects the intestinal tract, and also greatly increases the risk of developing colon cancer.

Cole’s been fortunate in that he’s fairly asymptomatic (Crohn’s can be debilitatingly painful), and so far he’s got a healthy gut…no polyps. However, he does have to have regular colonoscopies and endoscopies. They view things from both ends.

I know the two procedures are fairly risk free (and having recently turned 50 am due for my first), but I tend to get nervous whenever he’s under anesthesia. It just makes me uneasy until I can go back and sit with him in recovery while he comes out of the purple haze. He’s a bit like Alex the Lion in the first Madagascar movie when he’s shot with a tranquilizer…groggy, and hallucinating, and then passed out again…rising slightly and then out again…Sammy Davis Jr. singing the Candy Man.

Cole is also prone to seizures, which doesn’t necessarily mean anything when it comes to going under. Only a small percentage of kids have seizures while under, and it’s generally harmless. For me, it’s just one other factor that makes me feel uneasy about him going under.

He handles all of this in stride. He’s always been pretty chill about having to have surgery or procedures or blood drawn or whatever. It’s simply part of the life he knows.

I try to take example from his calm and generally do a good job of keeping my unrest to myself. I’d never want him to know I feel anxious about anything he’s going through. I want him to feel like he can look to me for support and strength. Because that’s what moms (and dads) do. We stand by our kids…

Categorized in Family Life and Special needs parenting
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NOVACAINE FOR THE SOUL

December 10, 2014 - One Response

Two two hour long dental sessions for deep cleaning and cavity filling and I’m back in good dental shape. Feeling a bit worn from the drilling, scraping, and picking. And especially from the novacaine…

I somewhat shamefully admit, I’ve been a bit neglect with my dental hygiene for several years. I am a dutiful home brusher and frequent flosser but somehow I got derailed on the visits to the dentist. After these two recent visits though, I’m a convert. I vow to return to my former, diligent dental care.

For one thing, novacaine sucks. Numbness is completely awful. Despite the realization that I’m not actually drooling or walking around the office with giant puffy half lips (they did the right side last week and the left side today…deep cleaning aka torture and cavity filling), the tingly chin (weird!) and half numb throat and tongue feel so strange that it makes me feel like I’m on actual drugs. I know I’m not, but walking around I feel floaty with my head in the clouds, like I’m drugged.

So not fun. So happy it’s over. So learned my lesson! (and yes, I’m a total wimp…I know it and now you do too!)

Categorized in Family Life
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