IN MY ROOM
January 22, 2015

I came home a little early tonight because my husband had a meeting to attend. Cole usually loves it when I’m home early and we have a “mom-Cole” night. We usually do a little sharing of our days, a quick pass through his school binder, and then we usually settle in and watch a little TV, have dinner together, bath, maybe a little reading and bed. It’s nothing special but it’s just the two of us and we both used to really enjoy the little time together.

Tonight, however, the teenage boy that I now know as my son, preferred to spend the evening in his room. He’d already started his dinner in his room when I got home because he was really hungry, and once my husband took off, I suggested he come hang out with me in the living room. No thanks, mom. I want to stay in my room. The whole time!

I had dinner alone, not sure of what to do with myself. It’s so strange to be home in the house with Cole but not to be in the same room. I know it’s a typical teenage behavior and I am so pleased that he likes hanging out in his room. I’m just not used to it. For thirteen years he’s been unwilling to be alone in a room and now out of nowhere he loves it!

I can certainly get used to this growth. I feel like it’s a positive change for everyone. We enjoyed several dinners in the dining room sans Cole (who was happily hanging out in his room) during the weekend while our friend was visiting, and tonight I did a little guilt free work while I had dinner on my own. I still kind of missed him though…

Cole and I are on our own Saturday and Sunday this weekend…I’m hoping he’ll want to spend some of the home time with me! If not, I’m making some plans of my own…hello facemask and pedicure! Maybe find a movie or two to watch…a little house project I’ve been putting off…quiet dinners with my husband in a candlelit dining room.

I’m starting to see the possibilities of this new routine!

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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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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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MASHED POTATO TIME
December 9, 2014

On Saturday Cole hosted a mashed potato tasting to collect data for his science project, HEAVENLY MASH – The perfect method for mashing potatoes. He prepared the same recipe four times using four different tools for mashing to determine which produces the most pleasing textured potatoes and to see if the texture has a an effect on the perception of the taste.

Friends, family and neighbors gathered to taste and rate the samples. All in all about thirty people tasted four different versions of mash and completed a short survey. The support was tremendous. The afternoon was fun.

The results are still under analysis but it looks like the version pushed through a ricer is the winner, which supports his hypothesis. The science competition is in February so there’s time to create the trifold with all of the details, data and photographs. He’s working on graphing the surveys right now.

While the experiment is somewhat subjective, it’s been great fun to see him working through everything and preparing for the tasting. His interest in both science and cooking are both serving him well with this project. I love it when he’s engaged in something like this and is enthusiastic about working on it and talking about it.

I know he’d like to win again. The whole experience of moving forward to the LA County Science Fair last year is still something he’s tremendously proud of, as am I. I’d be happy to him to have that success again, but I’m also very proud of the focus he’s shown in creating an experiment that is meaningful to him, and exercises both his science chops and creativity.

This is the recipe we created for his Heavenly Mash:

5 medium Yukon Gold potatoes
¾ cup whole milk
1 stick unsalted butter
2 teaspoons kosher salt
1 teaspoon freshly ground black pepper
2 teaspoons sea salt for boiling water

1. Place peeled and quartered potatoes in a large pot and cover with cold water.
2. Add 2 teaspoons sea salt to the water and potatoes.
3. Bring to a boil and continue to simmer until potatoes are fork tender – approximately 20 minutes.
4. Drain potatoes in a colander.
5. Return them to the still warm pot so they can dry out a bit.
6. Meanwhile, gently warm the milk and melt the butter together in a small saucepan.
7. Gently press the potatoes through a ricer into a large bowl.
8. Add the warm milk & butter mixture, along with the salt & pepper, and gently incorporate it into the potato

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TEENAGE DREAM
November 18, 2014

I’m feeling a rush of sadness of late.

Having spent quite a bit of time with Cole on my own these past weeks, I’ve had the pleasure of his company during all of my free hours. He seemed fairly content to just hang out with me during this time, and there weren’t many opportunities to plan outings or get-togethers with friends. We weekend lunched with Grandma, and did some running around town with her as well, but otherwise, it was just the two of us.

Many of his dearest friends are involved in sports. The girls have all discovered volleyball and play both on the school team and have just started league play, which will greatly reduce their weekend free time. The boys are doing soccer and wheelchair basketball. Cole’s opted out of baseball this season so he’s got more free time than usual.

I fear that the dreaded moving on is also occurring. While I know he’s loved dearly by his friends I worry that the day will come when he’s not keeping up as well, or where they’re moving on too fast. Despite caring about him, the girls will start doing independent group outings with other boys…and the boys will start doing the same. His independence will always be reliant on a caregiver or parent or older “friend”. Not exactly the ideal baggage for him to carry on group outings or dates.

I know I’m getting ahead of myself and of him but sometimes things like this get stuck in my head and I need to sort them out for the moment. Advance prep for when the situations actually arise? I just want his future to be rich and full. Teenage years are hard enough when you’re typical, but when you feel typical on the inside and your body somewhat fails you, teenage years seem daunting.

I don’t want him to have to spend his weekends with me, or with my husband and I. I want him to experience the rises and falls of teenage life as much as he can. I want him to fall in love and more than anything I want him to be loved.

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I AM THE DJ (Series – 4)
November 15, 2014

For some strange reason Cole is more willing to try new music when he’s alone with me as opposed to when he’s in the car with both my husband and I. Lucky for me, I’ve had a few lone weekends recently where it was the just the two of us driving around town, rocking out. When he’s in the mood for fun, we car dance and we both gleefully sing loudly which most certainly would be unpleasant should anyone hear us! This weekend I think I’ll try to oldies like Jerry Lee Lewis! Maybe he’ll like seat bopping to that era…These are a few songs we tried last weekend…

On our recent playlist:

1. Prince – Let’s Go Crazy (LOVES)
2. Prince – I Would Die 4 U
3. Hall & Oates – You Make My Dreams Come True (thank you to The Voice!)
4. George Ezra – Did You Hear The Rain?
5. Lloyd Cole & The Commotions – Perfect Skin
6. Lloyd Cole & The Commotions – Are You Ready To Be Heartbroken
7. Camera Obscura – Lloyd, I’m Ready To Be Heartbroken (how can you not?)
8. Foster the People – Helena Beat
9. Hozier – Take Me To Church
10. Weezer – Aint’ Got Nobody (already loves Weezer)

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