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.

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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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LET’S DANCE
January 16, 2015

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…

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ALL BY MYSELF
January 15, 2015

I dream of finding a little alone time in my day, my week, my month, my life…

My weekday generally consists of waking around 6 am, going through the morning routine of getting everyone ready for school and work. The boys leave around 7:30 am, and I usually run around the house doing a little tidying, having some breakfast, and getting a jump on work emails before I head out to the office. I am guilty of using this time to dawdle too. It’s literally the only time I’m consistently alone in the house, ever.

Then I work…I work for an international film distribution and production company. It’s a business I’ve been in for about twenty years in one way or another. I currently do contracts and financing and formerly, pre-Cole, did international sales. I enjoy it. I work for an interesting company, with a great group of people, and am challenged by my work. I generally leave work by 6:30 and arrive home sometime around 7-7:15 pm.

My husband picks up Cole from school and usually has his homework and dinner handled by the time I get home. One of us then prepares our dinner, we try to cook most nights, and then we settle in to eat, bathe the boy, and get him tucked into bed by 8:30. He still prefers if I sit with him while he falls asleep, so I usually try to watch a one of my TV shows quietly while the boy falls asleep (my husband and I have some shows we enjoy together, and some not so much!), whilst playing Words With Friends or catching up on some favorite web news.

If I don’t fall asleep while putting Cole to bed, I’ll indulge in some TV with the husband and then do some reading (pre-bed reading is a must) before I fall asleep around 10:30. And then, it starts all over again. It’s very Groundhog Day.

There’s little opportunity in the day for alone time or me time. Maybe it’s selfish. There’s nothing specific I do when I have a bit of time to myself. In fact, I usually end up doing some of those little housey projects that never seem to get done – revamping the linens closet, or clearing out Cole’s old clothes and toys, or tossing all of the old tea from the cupboard (yes, tea expires as I’ve recently learned! That 2009 box of Christmas Chai is probably not going to taste very good!). All mundane, but all satisfying accomplishments. All simple tasks, but all things that an impatient, sometimes demanding child make so hard to do in the context of shared time.

And forget about the kind of me time where I can take the time to give myself a pedicure or manicure. The boys complain about the odors of the remover and polish making it harder to do in shared time.

Weekends tend to be more family time, or time that Cole and I spend together. Because I’ve got longer work hours and commute than my husband, they have several hours of time together that he misses with me, so come Saturday morning, he craves mom time. We usually try to get out of the house and do something, even if it’s just errands and our regular lunch with my mom. It gives my husband some time to himself…The boy is less inclined to go out with just dad during the weekend because he’s somehow come to view it as “our” time. Unless of course he’s holed his teenage self up his room to have his own alone time (his new favorite thing). I suppose I should learn to take advantage of his need for “me” time, and try to sneak a little of my own at the same time!

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DON’T STAND SO CLOSE TO ME
January 13, 2015

Cole’s maturing in some ways and not so much in others. It’s a fascinating process to observe. He rails against our efforts to lead him forward but then has recently found preference in hanging out alone in his room, watching TV or listening to music for hours at a time. Up until this point, he’s never found comfort in himself so we’re thrilled by this typical teenage move. I feel great pride in his newly found step toward independence.

Also returning to school after the winter break has been surprisingly stress free. Prior to the break, the morning routine had been tough. For the first time, Cole was not enjoying school, which made morning prep difficult. He teetered between saying he was not feeling well, or was sad, or just angry. The past week and into the current week, he’s easy and happy about going to school. I’m not entirely sure what changed but he’s seemed to have found a way to look forward to school again. There was a change in staff, a new teacher who he has for both Social Studies and Language Arts, which may be part of the interest in school again. The former teacher never managed to understand the concepts of inclusive education so he had a lot of frustration of being overlooked in her classes. Whatever the incentive, it’s a relief to see that he’s found his way back to liking school and he came to it on his own.

When one is physically dependent upon others for nearly everything, developing self- confidence and having opportunities to find trust in one’s self is crucial to having good self-esteem. I see Cole starting to recognize that he needs time to himself and that he needs to have us (us as his parents, and us as all of his supports collectively) respect his choices and to provide as many opportunities for him to have more independence. For now, I’m proud to step back and support his efforts to stand away from me.

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THE LAST SONG (Series – 1)
January 10, 2015

Somewhere down the line in reestablishing my blog and writing, I decided to challenge myself and have a little fun with the titles of each post by using a song title that connects with the subject, at least in my mind. I’m not sure if anyone’s noticed, or even cares much, but I thought I’d share the artists and songs that relate the posts. I plan to continue this and in the future I’ll doing monthly round up of the artists. Besides, writing, I love music so it’s a fun way to bring the two together. Thus far, following are the titles and their artists:

1. A KISS TO BUILD A DREAM ON – Louis Armstrong
2. A LITTLE LESS CONVERSATION – Elvis Presley
3. ALL I WANT FOR CHRISTMAS IS YOU – Michael Buble
4. ARE YOU READY TO BE HEARTBROKEN – Lloyd Cole & The Commotions
5. BLUE CHAIR – Elvis Costello
6. DANCING WITH MYSELF – Billy Idol
7. DO YOU FEEL BAD ABOUT IT – Frank Black & The Catholics
8. DO YOU HEAR ME? – Missing Persons
9. EVERY DAY IS LIKE SUNDAY – The Smiths
10. EVERYDAY I WRITE THE BOOKS – Elvis Costello
11. HELL ON WHEELS – Charlie Daniels
12. I AM THE DJ (Series) – David Bowie
13. I LOVE TO READ – Nick Lowe
14. I MELT WITH YOU – Simple Minds
15. I WOULD WALK 500 MILES – The Proclaimers
16. I’M JUST A GIRL – No Doubt
17. I’LL STAND BY YOU – The Pretenders
18. JUST THE TWO OF US – Bill Withers
19. LOOK AT GRANDMA – Bo Diddley (in honor of Cole’s Grandma)
20. MARK ME ABSENT – The Clash
21. MASHED POTATO TIME – Dee Dee Sharp (In honor of Cole’s Dad who was in the original Hairspray movie)
22. MERRY CHRISTMAS EVERYBODY – Slade
23. NEW YEAR’S DAY – U2
24. NOVACAINE FOR THE SOUL – The Eels
25. OUT ON THE WEEKEND – Neil Young
26. PEOPLE ARE STRANGE – The Doors
27. ROBERT ONION – Frank Black & The Catholics
28. SCARS – Papa Roach
29. SCIENTIST – Coldplay
30. SUNDAY MORNING – Johnny Cash
31. SWEET DREAMS – Eurythmics
32. TEENAGE DREAM – Katie Perry
33. TEENAGER OF THE YEAR – Frank Black
34. THANK YOU FOR SENDING ME AN ANGEL
35. UNDONE (The Sweater Song) – Weezer
36. WE ARE THE WORLD – The Live Aid song for Africa
37. WHEN YOU WERE YOUNG – The Killers
38. WHEN YOU’RE NEAR ME I HAVE DIFFICULTY – XTC
39. YOU’VE GOT A FRIEND – Carole King
40. THE LAST SONG – The Foo Fighters

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BLUE CHAIR
January 9, 2015

Try to imagine not having the ability hold your body upright to support sitting. Where would you sit? What kind of options would you have? The answer? Very few, and nearly all with straps and supports to keep you in place.

Cole cannot sit independently. He’s had scads of different chairs, starting with high chairs, strollers, chairs that clipped onto tables or strap onto chairs, and his wheelchairs – all seating devices that have straps to hold him in place.

In order to sit on a couch, or bed, independently, he’s propped up and wedged into place with heaps of pillows surrounding and supporting him. He can often get lost in the mix, slipping down or sideways.

It wasn’t until a few years ago we ran across the magical Chill Chair at an abilities expo that featured products of all sorts designed to enhance the lives of those living with disabilities. The Chill Chair (it definitely deserves capitalization!) is the first chair that Cole could sit in without straps or any additional supports. It looks much like comfy upholstered chair with a ottoman attached, except that the seat has a little indent for his tush, and the chair back sort of hugs him. He can sit with his legs up (his preference), or without the ottoman, bent downward. It’s amazing. It’s among the single greatest things we ever purchased for Cole.

We actually have two at the moment. We started to feel that he was outgrowing the first chair, so made the purchase of a second, larger size one only to find it was too big. One’s not quite too small and the other is quite too big! The upgrade includes a table tray that can fold away or be used to hold his Tobii (eye-gaze voice output communication device), or a tablet for listening to music or books, or his tray of Sand or a game…or whatever…It’s definitely a cool, smart addition. He just needs to grow a little more to fit in the chair! I suspect this one will take him quite far once he does fit in it. He’s not likely to be very tall. The Chill Chair rocks.

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I READ A LOT
January 7, 2015

I love to read. I try to read every night even if it’s just a page or two, though more often than not I get lost in whatever book I’m reading and waking up in the middle of the night, having rolled over onto my tablet or book. I favor mysteries, especially international crime thrillers, but I like to mix it up with novels and short stories, and the occasional bit of non-fiction.

As I’ve written previously, my dad kept journals of his readings. I have one of his handwritten little notebooks detailing the readings of 1968. It’s something I treasure. I often think about doing the same thing but then I move on to the next book without recording anything about the last. Perhaps this year I’ll attempt to document my reading. It would be fun to look back at the list several years later and be reminded of where I got lost in 2015.

I’m currently reading The Paying Guests by Sarah Waters. It’s set in 1922 in England, post WWI. A formerly privileged widow and her unmarried twenty something daughter, finding themselves without means, have to take in tenants to keep their home. The tenants, a young married couple, change their lives, especially that of Frances, the daughter, in compelling ways. I’m only half way through and am enjoying it. I am, of course, looking for the thriller element, even where it doesn’t exist.

I have a tendency to build upon my readings in my head whilst reading. I imagine where the story might be heading and sometimes I’m right. Sometimes I’m not. I have a tendency to devour series and as I grow more familiar with both the author and the main characters, I can often take the journey one step ahead of the book. It doesn’t spoil it for me. It actually makes me feel more a part of the investigation or story.

I love to read with Cole too. I’m not great at voices but I sometimes try to give accents to characters or different intonations or inflections. He’s forgiving and when we find a book he likes, he’s a great partner and listener. I wish he could find it in himself to get lost in books the way I did when I was young. He’s got limited options for independent time, in the house, or in his room and reading would be my first choice for him. He can listen to books on Audible, or read on his tablet, using his eyes to turn pages, but he’s not embraced the escape of a good book. It’s my dream that he will one day understand the magic of a well told story.

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I AM THE DJ (Series – 6)
January 6, 2015

We made it through the past few weeks of holiday listening to nothing but holiday music. Thankfully Spotify has some fun, and very comprehensive playlists already! The Ultimate Holiday Playlist was great, and there were lots of fun versions on the Indie Holiday Playlist.

But this past weekend, I was cooked. I don’t think I could handle another fa la la, or white Christmas. Since Michael Buble was a favorite Christmas album, I decided to try some of his non-holiday music. I’ve never really listened to him save for the Christmas album, nor had Cole. I’m old enough now that I can admit without shame that the songs we listened to weren’t bad. We both kind of liked them.

We also spent days listening to the Annie soundtrack after seeing the movie with some friends over the weekend. Cole had been a fan of the Broadway soundtrack, and acted in the play himself so the music is all familiar to and favored by him. The movie version, of course, has some updated versions and some originals so it felt fresh to him. He did let me know that he thought his friend Sami was a much better Miss Hannigan than Cameron Diaz. He thinks she sings better too.

His dad took a stab at DJing too. He’s introduced Cole to the Dandy Warhols with some success. I’m not sure what they listened to on the way to and fro school yesterday but I’m hoping it wasn’t holiday music. Come this weekend, I’m banning it from any driving I do! I’ll have to think about some new music to introduce him to. While Annie is okay, I don’t think I can listen to it with any regularity. I fell asleep with Hard Knock Life running through my head on a loop…contemplating some serious headbanging to get it out!

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WHEN YOU’RE NEAR ME I HAVE DIFFICULTY
January 3, 2015

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.

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