Archive for the ‘Special needs parenting’ Category

I Melt With You
September 15, 2014

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…

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I WOULD WALK 500 MILES
September 11, 2014

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!)

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HELL ON WHEELS
September 10, 2014

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!

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SCARS
September 9, 2014

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.

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COLE’S CONFETTI CUPCAKES
September 3, 2014

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)…

 

 

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(PLEASE DON’T) RING MY BELL
September 2, 2014

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.

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