A LITTLE LESS CONVERSATION

September 26, 2014 - Leave a Response

Let me be the first to site my conversational faults. I struggle with not interrupting, especially when I am excited or passionate about a topic. I also get stuck inside myself in thought. My conversational skills took a dive when I was home for many years with my beautiful son, who doesn’t speak. I talked to him incessantly, and to anyone who came into my world during that time…his therapists, my husband, visiting friends…I was so desperate for adult conversation but so out of practice that I often co-opted every dialogue.

I’ve since regained some of the skills but I do still struggle, both with my own faults and with others. Good conversation is truly an art and I have the utmost respect for those who bear the talent and skill to be successful conversationalists.

A successful conversationalist is someone who is who well versed on the topic and who listens as well as they speak. The gift of gab also includes the ability to put others at ease, and to transition from topic to topic. Another key to being successful in conversation is the ability not to be repetitive in your story telling.

I feel like there is a form of disrespect in someone sharing the same story with you multiple times because it says that they weren’t really paying attention to the previous conversation(s). This skill is something that’s only recently become a pet peeve of mine, and I struggle to smile my way through third and fourth telling. I’m forgiving of a second telling, but impatient and uninterested in the third and beyond. I know I’m guilty of this faux pas on occasion but I’m aware of it and strive to make efforts not to perpetuate the behavior (as I do with my interruption problem).

My curiosity is whether there’s a kind, polite way of indicating to someone that this story has been shared with you many times without shaming or embarrassing someone? My interest is not to hurt someone’s feelings but to move a conversation forward. I suspect etiquette would dictate that you simply grin and bear it and then tactfully change the subject when it’s appropriate…

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TEENAGER OF THE YEAR

September 25, 2014 - Leave a Response

Cole’s officially a teenager and I’m not sure exactly what that looks like for him. As exciting as it is and as much as I look forward to all of the teenage angst, it also has me concerned about the changes that come with being a teenager.

I’m afraid that it’s the beginning of a transition that may leave him feeling a bit alienated. I hope I’m wrong…or at least that the teens move slower than I did. In most ways his development is pretty typical, despite the restrictions his body presents him. In other ways, he’s a bit less mature than some, a bit more so than others. Kind of middle of the road on that front! I see his interest in girls starting to pique, and I see his friends on the ebb of their own curiosity about boys and girls.

My concern is that as his friends and peers become more independent, adventurous, and even passionate, he’s going be left behind. He’s got wonderful friends, mostly girls, but some boys. He is adored, but as young romances bud, and independent events become the norm (movies, parties, dinners sans parents), he’s going to be in need of some assistance, and it’s not something that we can rely on friends to be responsible for, but also not times that a parent would be welcome. And how does it work if he wants to date?

Do you find a youthful caregiver who can just sort be there but blend into the scenery? Do you find a willing friend who is trusted and capable? This all falls into the category of things most parents don’t have to think about, and that no one ever tells you might be important…

Categorized in Family Life and Special needs parenting
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You’ve Got a Friend

September 19, 2014 - Leave a Response

I recently joined a mom’s support group for mom’s of special needs kids. Thirteen years in and I have come to realize that this would have been great for me from the get go. I didn’t realize it but having a safe place to share and almost more importantly listen to other women share feelings and thoughts that could come out of my own head on any given day is extremely cathartic. Cathartic in a way that differs from talking to close friends, even close friends who are in similar lives.

The safety of being able to share freely without judgment and simply for myself is liberating. The understanding that I am not alone on those days when I just want to cry and ask the unaskable question WHY? WHY ME? WHY IS THIS MY LIFE? The unspoken words that no respectable parent would utter out loud, but that do live in our heads.

This realization that I am actually a group person is new to me. Very happily. It’s changed my life. It’s incited me to rejoin another support group…weight watchers…the only time I’ve successfully lost weight was during the months that I first attended WW. For whatever reason I stopped, and while I did not regain, I’ve only maintained since I stopped. A feat in itself but I’d like to lose more to for healthy and esteem reasons. I like when people are shocked I’m to learn I’m 50. I’d like it more if I wasn’t fat and 50.

I’ve come to realize the reason I was successful with WW is that I do better knowing I’m not alone. I like having a place to go where no one is going to judge me and where there are room full of people in the same boat who are all there to support one another. Supporting one another is a good thing. It’ a good thing when you’re facing challenges, or not.

Categorized in Family Life and Special needs parenting
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I Melt With You

September 15, 2014 - Leave a Response

I’m a native Southern Californian. I’m an original Valley girl to be exact. I can tolerate heat and I know the ins and outs to getting things accomplished when it’s wickedly hot. However, wickedly hot is the high 90’s to low 100’s. The past days have been over 110 degrees. At some point, the incremental heat increases tenfold! It’s too damn hot. It’s hard not think or talk about anything but the heat.

This past weekend was over 110 degrees outside and the home air-conditioner struggled to maintain the house at even 80 degrees. When it’s this hot there’s little motivation to do much of anything. Although just sitting on upholstered furniture is a sticky affair too. Our comforter is down filled so lying on top of it is miserable because it warms you from underneath. The couches are also down filled so after a little sitting, you’re left with a toasty tush. And forget about the car! Those first minutes are suffocating.

Cole’s chill out chair is anything but chill when the temperature is this hot. It’s covered in an insulated fabric that protects the chair frame from any spills, leaks or otherwise, which is some sort of plastic or similar kind of lining…something that doesn’t breathe. So poor dear ends up with a sweaty back, bum and thighs.

The cat just sleeps, and the dog has wisely discovered the cool hardwood floor right under the air-conditioning vent. Arguably she found the single coolest spot in the house. Cole swam, and soaked in the bath tub until he wrinkled. Mostly we all just melted…

Categorized in Family Life and Special needs parenting
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I WOULD WALK 500 MILES

September 11, 2014 - One Response

We receive written notes about Cole’s school day each afternoon. Yesterday’s note indicated that he had spent an hour and half walking in his gait trainer, a walker of sorts, during P.E. He’s been walking a lot more and doing great with it.

Due to construction going on at his school, the kids have to exit the campus, walk up a low grade hill and through a gate that was structured at the top of what is temporarily the playing field…a sport court. It’s not a long haul, but for Cole it’s a huge effort to get up a hill, however small, and then to continue to walk and participate in whatever P.E. activities are scheduled.

Many doctors told us that he would never walk. Our first neurologist said that it would be up to him if he walked. If he wanted it badly enough, he’d figure out how to do it. He wanted it badly and he’ll take it however he can get it, even if it’s in the gait trainer, or with an adult supporting him by his chest and walking behind him. He loves to walk, run, leap and dance. He’s always loved to be on his feet.

The energy and effort he exerts walking just 50 yards is akin to the energy and effort it would take me to run five miles. It takes a lot of juice for him to get where he wants to go but he’s willing to do it. To spend an hour and a half on his feet, walking, and playing is tremendous. It’s impressive.

It occurred to me last night after reading the sheet that he might find it motivating to see how many steps he takes each day. He thought it sounded like a fun idea and I now have a great birthday idea for the most difficult child to buy gifts for! (Nine days and counting till 13!)

Categorized in Family Life and Special needs parenting
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HELL ON WHEELS

September 10, 2014 - Leave a Response

Perhaps a little dramatic but I just watched the first episode of the final season of Sons of Anarchy…

The aforementioned test drive power wheelchair will be spending the next month and half at Cole’s school so he can practice driving daily and learn to maneuver around his actual campus. He’ll also be able to have it at home on the weekends, oh my! Watch out world. If this doesn’t give the boy the motivation needed to master this beast, I don’t know what will.

The test chair is not perfect. It’s a tiny bit too small for him, and does not have all of the custom outfitting that his push chair has. He needs specific types of supports, including a five point harness across his chest that helps to right him in his chair. He also has an adductor piece that keeps his hips aligned, which again, helps him to sit straight and tall. The test chair does not have the ideal joy stick, or arm rest required to help him best access the driving mechanism.

However, somehow he does mange to access it and is doing pretty well with his driving. If he can master this chair without all of the things that will make it easier for him, he’s going to be insanely good when he has his own, customized, perfectly fitted power wheel chair. It’s exciting.

I can’t stop thinking about how much freedom he’ll have being able to be his own captain, to, for the first time, have a choice and the ability to fulfill it in terms of where he wants to go. We take it for granted that we can just walk over for a drink of water, to visit with a coworker, to move out of the sun while your mom is talking to a friend…He’s never had that. Until now!

Categorized in Family Life and Special needs parenting
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SCARS

September 9, 2014 - Leave a Response

A dear friend’s daughter recently started to come to terms with scarring she has on her chest from several opened heart surgeries she has endured in her short thirteen years. Understandably, she felt self conscious about them and their unfortunate placement, especially for a girl who wants to be able to wear cute tops, sometimes with lower neck lines. But it’s more than just coming to terms with the actual scars. They are in no small way a part of who she is. They represent her survival and the magic that is her. For that reason, they are beautiful.

Her writing about her scars got me thinking about Cole’s scars. He too has had a great many reminders of his strength and survival. His body is a map of his life in some ways. At birth he had chest tubes, represented by tiny “x’s” on either side of his upper torso. His little belly button has miniscule prick scars from something early in his life. Funny, I can’t recall what it was. A monitor of some sort I think. If you look closely at his eyes, there is a little scarring on the inner whites from a corrective ocular surgery to uncross his eyes when he was about eighteen months.

His calves have two sets of linear incision scars running down the back of each leg from two different surgeries to lengthen the tendons to give him more flexibility. He has similar scars in the crook of his upper inner thighs. Each hip has a slash where plates were inserted, one side to prevent slippage of his hip, and the other to repair the slippage and reinforce it.

And then there’s the tiny indentation scar on his right temple, caused by none other than his dear mother when he and I were in Newport Beach wandering the ocean side looking for a beach house rental for the upcoming summer. We hit a rough patch on the sidewalk and his wheelchair flew from my hands, into the street (thankfully a very quiet, traffic free street) and landed on its side. His eyeglasses nicked his temple. He strapped in safely never hit the ground, just kind of sat on his side with the arm of the wheelchair against the pavement. In one fell swoop, I righted the chair and he burst out laughing while I cried…

I don’t know how he feels about his scars. Many can’t be seen due to their locale. Even his leg scars are often hidden by the long tube socks and AFO’s (leg braces) he wears to stabilize his walking. The only scar in view always is the one I caused…normal wear and tear of childhood, kind of. I have a similar indentation in my forehead where my grandmother accidentally closed my head in a door…The only time most his scars are visible is when he’s bathing, or in the summer when he lives in shorts and swimsuits. His friends don’t ask about them. I don’t know if they even notice them. He’s always in motion so they kind of blend into the landscape of Cole.

I treasure each one because they serve as reminders of the force that is Cole.

Categorized in Family Life and Special needs parenting
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COLE’S CONFETTI CUPCAKES

September 3, 2014 - Leave a Response

I may have shared that Cole has a g-tube. He’s been fed through it since he was five weeks old…so going on thirteen years! He gets all of his nutrition and hydration from his tube feedings but keeps his taste buds active and keen with regular bites and tastes of fruit, fro yo (chocolate is his favorite), miso soup, sushi, birthday cake, and french fries with lots of ketchup! He drinks sips of water, juice and iced tea (he loves earl grey with a touch of honey and green tea). For much of his life he’s been a self-proclaimed vegetarian, a claim influenced by my husband’s goddaughter who has been a vegetarian since birth, despite having two carnivorous parents. Cole has tried sushi and has recently tried a little speck of hot dog and of a turkey burger but by and large he has little interest in anything meat. Which is fine…

The funny thing is that he’s been an avid viewer of cooking shows since he was a little tiny boy. He watches with intent and interest and loves to help me cook as well. We’ll chop together and mix and stir. He’s sous chef. He’s gone to weeks of summer cooking camp, bringing home the days recipes and leftovers for us to taste. He really loves cooking and watching cooking shows.

So when it came time to plan his 13th birthday party, we thought of several ideas. I suggested the backyard movie party that we’ve done the past couple of years (Princess Bride for 11th and Star Wars for 12th), but he nixed it. Somehow we came up with a cooking party and then after watching some you-tube videos for some recipe ideas, we decided to make confetti cupcakes, and to film he and his friends in action to create a cooking video.

Now the prep begins. Finding the right cupcake liners, choosing favors and planning a snack menu for the kids to nibble on whilst the cupcakes cool so they can be frosted. Here’s where I kick into gear. I’m great at the nuts and bolts of things while Cole’s a great idea man. I’m figuring this is probably the last year of traditional birthday parties. Teens don’t much do the party thing…The fun thing is that we’ll have a tangible memory of this one! Our first you-tube post…

(I’ll share the highlights of the party – it’s not until the 21st and maybe a link to the video if we succeed in creating the video)…

 

 

Categorized in Family Life and Special needs parenting
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(PLEASE DON’T) RING MY BELL

September 2, 2014 - Leave a Response

We’re into our third week of 7th grade and it doesn’t feel like the anxiety of a new school year and the transition to the new teachers and classes is dispersing at all. In fact, there’s a whole new stress that now accompanies each school day. The morning bell…

My son suffers from startled induced seizures. They’re usually pretty short, not too invasive, and triggered by noises of some decibel level that leaves me perplexed. Sometimes the dog barking, a friend rushing up with a high pitched “Cole”, the dratted morning bell, a sudden exuberant outburst from mom, or something that I don’t register…You just never know.

But the bell has become his nemesis. During the final minutes of the drive to school there is a notable change in his demeanor. His body tenses, he becomes agitated. All in anticipation of the morning bell. It’s heartbreaking and frustrating. Probably more so for him since it shows an awareness of the seizures that he’s not had before, but also for the poor slob driving him to school (usually his darling dad). There’s a helpless feeling that washes over the driver, knowing there’s really not much we can do to ease the anxiety.

We’re working on finding ways to help him with it, but it takes time, and it takes his cooperation. We saw an amazing therapist this past weekend who created a story for him to use as a tool to help to ease his stress, anxiety, frustration, anger, and even sadness. It was fascinating to watch him while he listened to her create the story and dialogue with such interest and focus. We were provided with an MP3 of the story so that he can learn to weave it into his own internal narrative to help dispel the “shark” (the negative or fearful feelings). Time will tell but he was opened to the process and is keen to try to move past some of the negative things so I’m hopeful.

We also are trying noise cancelling headphones for the dreaded morning bell. Maybe just muffling the sharpness of the ring will help, or playing something comforting like the therapist’s MP3, or favorite music, will help ease the morning. I don’t know. He doesn’t always have a seizure, but the anxiety of the bell has become a problem in itself. I am hopeful we can relieve some of the bell stress. I feel like if we can help him to move past the bell, it will give him some confidence in his own ability to sooth and calm himself in other situations.

Categorized in Family Life and Special needs parenting
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ROUTINE BOY

August 12, 2014 - Leave a Response

It feels strange to consider mid-August the end of the summer but school for us starts next week and that is the traditional benchmark for the end of summer. This last week is a bit dull for the boy. He doesn’t have a camp or play dates scheduled and his friends all seem to be on floating schedules this week like him. He’s not a happy camper. Routine boy is disgruntled by free flow, plan free, endless days. He’s a kid who respects routine. He likes knowing where he’ll be each day and what’s expected of him.

School breaks throw him off. He can have fabulous plans and thoroughly enjoy his time off but at the end of the day, he much prefers the routine of school. Everyone does their respective weekday thing. He goes to school and after care/homework club, his dad and I both go to work, and most nights we all converge on the house within a couple of hours of one another and have dinner and a little TV together and chat about our days or the next. He likes it like that. It keeps him even keeled.

Besides our little road trip last month, this week is the most topsy turvy of the summer weeks. Unlike the road trip, which he enjoyed (excepting that he has made it clear that he would prefer future vacations to include a friend, grandparent, or meeting another family so that he doesn’t have to vacation just with his parents), this week is mostly just him and a caregiver. He adores her and they’ll do this and that and maybe run around town a bit but not knowing what is going to happen makes him a little nutty.

I thought about scrambling around to find things for them to do and people for them to see but it seemed like too much effort and in the back of my mind I thought it would be good for him to break free of the routine and do a little flying by the seat of his pants. Not sure it’s working out but it’s only Tuesday…so we’ll see.

Categorized in Family Life

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