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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LOST IN THE SUPERMARKET (Series – 1)
January 12, 2015

I love to cook. I’m considered a decent home cook by my friends and family and am pretty adept at off the cuff recipes and recreations of dishes I’ve adored in restaurants. I started cooking when I was a teen. At some point, I decided I wanted to be a vegetarian. My mom supported this but wasn’t up for making separate meals for my brother, dad and herself, so she said I’d have to make my own meals. I’d always liked cooking with her and with my dad, who never followed recipes, creating sometimes, amazing dishes, and sometimes terrible – the grape jelly omelets were among the worse!

As my cooking skills improved, I started doing stray dinners for mostly the boys in my life. I’d host Saturday night dinners so we had nourishment before we went clubbing. Among the favorites were seafood pasta (oh how I wish I could remember how I made that now!) and spinach strudel.

Sharing meals and cooking for friends has always been an expression of my affection. When I have no words of condolence that seem helpful, I bring food. I make treat baskets for our neighbors, the postal carrier and gardener during the holidays, and I often make extra batches of dinners to share with my mom and her boyfriend. Cooking makes me happy. Everything about cooking, from the supermarket, to the preparation to the final touches, pleases and relaxes me.

With the demands of my life now I don’t have the chance to experiment as much as I once did. We do try to cook dinner at home most nights, avoiding take-out as much as possible (unless there’s a mad craving for ramen!). We plan our meals each weekend and head to the supermarket and Trader Joe’s to procure everything. Sometimes we wait until Sunday mornings to be inspired by our local farmer’s market but it’s not always the easiest thing to do. Then, I’ll try to do a couple of dishes on the weekend so we have easy prep for weeknight dinners.

Lately however I’ve been in a bit of a rut. I feel like the weeknight meals are starting to all look alike. There are a dozen or so meals that we do with regularity largely because they’re relatively healthy and easy. Time runs short on weeknights. I don’t get home until 7pm from work, and Cole goes to bed around 8-8:30pm, so time is precious. Cole usually has had his dinner (he’s fed via g-tube as I’ve mentioned) by the time I’m home, so it’s just the two of us, but also bath and sometimes homework and reading, and then bed for the boy. It goes quickly! Definitely not the time to be experimenting with new recipes!

That said, I’m determined to incorporate new recipes into our repertoire. I plan to introduce a new recipe, especially new grain and veggie based dishes, each week or two. Some may become regulars, and some may be one offs. But we’ll vary our meals and maybe find some new favorites. Stay tuned for the first new recipe and results!

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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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DO YOU HEAR ME?
January 8, 2015

Listening is a great skill. It doesn’t come easy for many of us, and I’ve learned that I struggle with being an engaged listener. It’s not that I’m not interested to hear what someone has to say, but more that I spent many years living with just my own voice, and inside of my head, for much of the day and I still find myself getting caught up in the thoughts that accompany listening or in interrupting because of the excitement of conversation. It’s been years since I was a stay home mom, but it’s something I still struggle with.

I stayed home with Cole for the first seven or eight years of his life before getting back into the work force. Having a non-verbal child, and being around the silence, made me a very chatty mom. I talked to Cole constantly and responded in kind. The difficulty of that is that the reciprocal aspect of conversation disappeared from my daytime life. It’s hard to listen when you’re playing both roles. At least, for me it was.

I have trouble with interrupting as I’ve mentioned. I really do work on it but sometimes I catch myself talking over a friend or colleague and it’s too late to pull back. I end up feeling terrible and then sort of withdraw from the conversation as much as possible to prevent it from happening.

On the flip side, I likewise feel terrible when I feel like I’m not heard. It seems to come with the territory of marriage. I’m guilty of it as much as my husband is. Sometimes a person just isn’t up for listening. Sometimes it just takes too much effort but instead of kindly bowing out of a conversation or expressing the need for some solace or silence, we just pretend we’re listening, while actually tuning out. It’s not the kinder choice but in a strange way it seems like the more polite choice, even though it’s not.

With this is in mind, I intend to continue to make every effort to try to be a more active, attentive, and respectful listener, as well as to find better ways to better communicate when I know I’m not up for good listening. I think it’s okay to take a little time inside your head now and then. Sometimes listening to yourself is just as important.

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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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MONDAY, MONDAY
January 5, 2015

General laziness won out yesterday…some things were handled, but quite enough to make today feel easy. Surprisingly, Cole got off to school without any fuss or drama. Hopefully it’s the start of a good day for him. I’m sure seeing all of his friends, even those he saw over the break, will be good for him as well as simply getting back to the structure of a school day. Besides exercising his brain with school work, the physical exercise will feel good for his body. He’s much more physically active at school where he walks in his gait trainer daily, as well as doing some standing, and P.E. class.

My intentions of getting out of the house early did not quite happen. It’s the first morning in the house that I’ve had to myself since the middle of December and I spent the morning finding little things to tend to. I am the queen of dawdle. I can putter around, not exactly wasting time, but definitely not doing what I’m supposed to be doing, all morning if left to my own devices. My hope for a dawdle free morning has already been thwarted. The dog needed brushing, the house needed a little picking up before the cleaners come later (yes, I’m one of those people who straightens up for the cleaners), and the cat needed a little focused attention.

It’s not that I’m dreading work. I actually like my job and I especially enjoy my coworkers. I just like time to myself more, and it’s a rarity in my life. I’ve got so much stuff to take with me to work today. Among them, the under the desk elliptical machine, some homemade chia water, my new tea infusing tea cup, some loose tea, and a few healthy snacks for the week. I’m prepared to have a great start to the year in terms of wellness.

I’ve also tucked my $1 away for the first week of the year savings. There’s a challenge going where each week you put away an amount equal to the corresponding week. This week 1, $1, next week 2, $2 (total saving $3), etc. By the end of year I’ll have $1,400 saved without ever really noticing.

I’m looking forward to coming home tonight to hear about my guys’ days. That’s one of the nice things about all having different days, sitting together at dinner sharing our experiences and laughing together. I guess I should get my day started so it can end…

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SUNDAY MORNING
January 4, 2015

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…

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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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