Archive for the ‘Teenagers’ Category

VOICES CARRY
April 13, 2015

Navigating the world when you can’t speak is tricky. In order to share your needs or to participate in conversations or activities you need to rely on others paying a modicum of attention to you, which is not under your control at all. I see the frustration and sadness in Cole sometimes when people, sadly, including myself, don’t notice he’s trying to express something or vying to be a part of a group conversation.

When he was small, it felt natural for one of us to sit near him so that we could facilitate his inclusion a bit. Most younger children have their parents close even when they’re socializing with other kids. Now that he’s a teen, and going to parties and outings where his friends are dropped off and on their own for the most part, it’s a different scenario.

He doesn’t want to be the only kid with a parent around, and if there is a parent around, he definitely doesn’t want them in the thick of things helping him be part of the group.

But he’s not able do this successfully on his own and friends can’t be held responsible to include him or to make sure he’s an active part of the festivities.

I’ve written about this before but I’m grappling with it because I see him left out of conversations more and more and I see the effect it has on him. And it’s not anyone’s fault. It’s sadly just a reality of his circumstances and I struggle with how to make it better for him.

I don’t have any great solutions and the tough love part of me feels like he needs to accept some of the responsibility in it. He has a communication device that he uses at school, but that he most often refuses to take with him anywhere during the weekends. I understand some of his reasoning as it’s rather large and blocks him from view from people a table, and also blocks everyone else from his view. Not ideal, but it gives him a voice and a means of including himself in conversations, and initiating them too.

The nurturing part of me wants to hire a peer to support him and facilitate his participation. A peer, as opposed to the adult support we do often hire, at least is part of the action too. It doesn’t seem as obvious as having an adult with him. But it feels a little like paying someone to be his friend, and that feels terrible. He’s got great friends who adore him and do their best to include him.

It weighs on me because there’s not really a great solution. He’s got a big 7th grade night time party this weekend that he’s so excited to attend, which is why this is on my mind. I just want it to be everything he hopes it will be…I know I can’t be there to make sure it’s a good experience so it ruminates in my head…If I could change anything for him, it would be to give him his voice…the impact of him having the ability to speak would change everything for him. More so than walking, or eating, or having better motor skills. I’d give anything to hear his voice.

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WHY DO FOOLS FALL IN LOVE
April 1, 2015

I had lunch with a friend yesterday. She’s a former colleague, and now friend, and also happens to have a son who is in the 7th grade. Besides both having been our business for nearly twenty years, we also share the intrigue of raising teenage boys. While our experiences are different, we share many common values and have similar interests in raising our boys to be well rounded, kind and respectful.

Both of our boys are starting to develop interest in girls, and she shared that her son recently asked her if she believed in young love, to which she responded emphatically with a NO. I found it to be a romantic notion and if Cole were to ask me the same question, I would probably have answered YES.

I love the idea of young love. I must have fallen in love (or thought it was love) a dozen times when I was young. I think back to certain boys and can remember exactly how I felt at that time in my youth. I must have been thirteen when I fell for my first real crush. He lived in my neighborhood and was the absolute end all be all in my eyes. I used to skateboard past his house as often as I could, hoping he’d be outside so I could talk to him. I dreamed about conversations we would have and would imagine walking to school hand in hand with him. Sadly, he didn’t share my crush but we did become friends over the years, and eventually dated briefly in high school but by then my crush had faded. Still, I loved the feeling of love.

There’s innocence to what I consider young love to be. It can be unrequited, but still feel intense and all encompassing. It’s almost like your emotions are experimenting with themselves, or working out the kinks, teaching you to understand them.

I wonder what it’s like now for teenagers to crush on one another. From what I can tell from stories my teenage nieces share and from other kids, is that young relationships often take place via texting and social media, and not so much in the realm of spending real time together, getting to know each other. It seems like there’s a bit of disconnect in the way todays youth, well, connects.

I’ve asked Cole if he likes anyone special and he smiles slyly at me. I’m not sure if the sly smile is an “as if I’d tell you, mom” smile, or “why, yes, there is a cute girl in class that I like” smile. My gut is that it’s the former, and I don’t push but I’d love to be privy to his heart. I want him to feel butterflies and excitement and to be tickled when that girl talks to him. Young love is not necessarily the same as the deep, romantic love we hope to share with that special someone as adults, but I do think it’s real and magical and I believe in it.

Posted in cerebral palsy, Family Life, Life, Love, Special needs parenting, Teenagers | Tagged: , , , , , | 2 Comments »

EVER CHANGING MOODS
March 10, 2015

I know teenage hormones are all over the place. For months we’ve had aggressive, angry teen inhabiting my sweet son. Eye rolling, sneering and an overwhelming desire to be away from his parents as much as possible. Sadly, a lot of the negativity has been directed at my poor husband, likely because he’s the one who is around Cole more during the week and therefore gets the brunt of his frustration that I’m not home as early. It’s disconcerting, but highly typical and seems to be somewhat commonplace amongst our peers.

Thankfully, a corner seems to have been turned this past week. Our boy is back to his sweet self. He’s been more tolerant and gentler of late with consistency. Not sure if it’s the hormones balancing a bit or he’s realized that the negative behavior is unproductive or he’s simply super excited about our upcoming ski trip. They all hold some validity and maybe all contribute to his mood change but honestly, I don’t care why. I’m just relieved to have things calmer and more relaxed within our little nest.

I know the swings will continue for some time while he’s moving through puberty, growing and developing, and I’m content to embrace my darling teen during these moments of calm. Teenage angst is familiar to me and I can cope with the swinging moods but I wish I could bestow my wisdom and experience upon him to help him understand that the aggressive angry behavior isn’t going to get him anywhere but hanging out in his room alone. He doesn’t care that I’ve been there alreadyEVER

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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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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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WHEN YOU WERE YOUNG
December 17, 2014

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…

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ALL I WANT FOR CHRISTMAS IS YOU
December 16, 2014

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!?

Posted in Christmas, Family Life, Special needs parenting, Teenagers | Tagged: , , , , | 1 Comment »

I AM THE DJ (Series – 5)
December 12, 2014

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!

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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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