I AM THE DJ (Series – 1)
October 2, 2014

Cole really enjoys music. Perhaps better said, Cole really enjoys music when it’s the music he enjoys. This can change on any given day, and when he’s in need of comfort, it reverts to the treasures of his toddler years like Laurie Berkner, Ralph’s World, and god forbid, Songs from the Street (the Street being Sesame). As soon as the weather cools slightly, the favored music becomes holiday music. It can be months of non-stop holiday tunes. There’s diversity in the holiday playlist, which now includes the awesome Bad Religion holiday album and Michael Buble’s too.

When driving alone with me he’s willing to experiment more with what he’ll listen to. He’s a fan of bands like Weezer, Green Day, One Republic, Foster the People, Coldplay, and They Might Be Giants. Keeping his more age appropriate likes in mind, I snap shots of my car radio display when driving so I can introduce him to new songs and artists on the weekends in hope of expanding our somewhat fixed (and often tedious) playlists. I thought I’d share the recent selection and turn it into my first ever recurring topic. Not all of the selections are hits but I’m honing my skills and more are hits than misses, especially if it’s just the two of us! For some reason he tortures his dad with only kiddie music and a strange unwillingness to bend.

If you have any recommendations…I welcome them! So here are the recent tries:

1. Benjamin Booker – Violent Shiver
2. George Ezra – Budapest
3. St. Paul & The Catholics – Call Me
4. Boy & Bear – Southern Sun (loves!)
5. Ben Folds – Song for the Dumped (listened to Ben for an hour!)
6. Nick Waterhouse – Say I Wanna Know (likes the whole album)
7. Andrew McMahon – Cecilla And The Satellite
8. Squeeze – Tempted
9. Lana Del Rey – Young & Beautiful (sometimes)
10. Joe Cuba – Bang Bang

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NO FEELINGS
October 1, 2014

Despite that fact that it’s 2014, and we’re no longer living in an era where we hide away children who have disabilities or challenges or are different, I was recently asked by a woman if I thought it was right for me to be taking my beautiful, smart, funny, wheelchair bound son out in public!

It still infuriates me despite having had some time to process it and to calm down. It also deeply saddens me that someone, anyone, takes this view. I try to wrap my head around her intention and while I suspect it comes from ignorance, it also came from a place where she (wrongly) thought she was initiating a protective skew on my exposing my son to scrutiny or judgment.

Part of me worries that there is a populous that will never be comfortable or accepting of people who are different. It’s hard to escape this reality. I’d be lying if I didn’t acknowledge that I see people secretly and not so secretly checking out my son. I see mothers shush their curious children and sweep them past us. When it’s convenient, I gently call them out, inviting the children to say HI or to ask questions.

I’m proud of my son. He’s an amazing kid who has faced challenges all of his life and still manages to lead what most would agree is a pretty normal life. He may do something in his own way, but it’s never stopped him from trying new things or pursuing interest. I want people to understand that just because some is different doesn’t mean that they’re not also very much the same.

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ACCIDENTS WILL HAPPEN
September 30, 2014

Yesterday tragedy struck on the playground. Cole accidentally collided with a friend whilst practicing driving the power wheelchair. He’s been really careful, mostly just harming himself, scrapes and bruises from running into benches and things. By all accounts he was moving and she ran up, from out of nowhere, to hug him without realizing he was moving and Wham! Bloody heel…I’m sure tears…

She’s thankfully okay and hopefully more keenly aware to be cautious around moving wheelchairs with newish drivers.

He’s okay too. He was really shaken up, knowing he had hurt his friend, accident or not. Even when the story was recounted to me when I arrived home after work, he was near tears over it. We texted his friend and her mom just to make sure everything was okay to reassure him.

His take away from this is that part of the responsibility of driving a power chair includes not only keeping your eye on where you’re going but being aware of your surroundings. It’s not unlike our own experience driving cars. He now has an understanding that while he can’t control what other people around him are doing, he does need be on the alert. His chair is a heavy, powerful piece of moving machinery that can do harm to him or to others if he’s not super aware of his surroundings, even when he’s driving cautiously.

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Best Thing That Never Happened
September 29, 2014

Sitting across from my husband, sharing a meal and uninterrupted conversation is a rarity in our lives.   On those rare date nights, I’m reminded of their impact of them on our marriage. I’ve always understood that marriage, or any valued relationship, takes work. It’s never easy for two people to sustain a relationship of any sort without acceptance, compromise, effort and passion.

Most experts cite scheduling date nights as one of the keys to maintaining a strong marriage, and I completely agree. However, most experts are not discussing marriages where there is a child with special needs involved. It’s not as simple to arrange to nights or days out for that matter.

For us the consideration in childcare is having someone who knows Cole well enough to understand and anticipate his needs. Someone who can lift and transfer him if needed to tend to his needs or to put him to bed. Someone who is comfortable with his g-tube if it’s during a mealtime. And someone who can be engaging with him and who will initiate activities besides just watching television. It’s a tall order, and one that unfortunately no one in our immediate family can accommodate.

He’s grown too big for my mom to lift him so evenings are tough, unless it’s a quick school meeting or something along those lines. Daytime quickies could work if the timing is right. He loves spending time with her but it’s most common that it’s an activity, shopping or taking her to lunch, these days.

We have a couple of people we engage but it’s dependent upon their schedules whether or not it works, and more often than not, it’s for group events or school events. It’s rare that we manage to find ourselves sitting across a table in a low lit restaurant, sipping wine, chatting and laughing…but when we do, it’s impactful. Not having to talk over Cole or the TV, and talking about random things that sometimes, shockingly, have nothing to do with our home life, family, or school, reminds me of our long ago dates.

Despite having been married for nearly fifteen years, these evenings serve to remind me of the times when I was just a girl and he was just boy and we were falling in love. We’re still in love, but there’s something so wonderful about the falling…

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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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(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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Moving Day – First Post
January 12, 2012

I’m making a change and moving my blog to a new venue. Typically with the advent of a new year, the list of resolutions includes one to write more consistently…to exercise and exorcise my brain. Nothing new in 2012. So I thought I’d try something different.

I’m the parent of a ten year old boy who has cerebral palsy. It’s not my only definition of myself, but it’s the most notable. I’m a mother, wife, professional, daughter, sister, aunt and a very good friend. I work full time doing business and legal for an international film distribution and production company. I have been married for almost twelve years. We’ve survived the challenges of simply staying married, but even more so of parenting a differently abled child. The stats on marriages surviving special needs are pretty staggering. In many ways, our parenting experience has brought us closer. We share the common desire to make the boy’s life as rich, happy and amazing as possible, and to enable him to do anything he can imagine. You’ll get to know the boy well through this because he’s amazing. Amazingly determined, amazingly well adjusted, amazingly frustrating, amazingly funny, amazingly sweet, and most amazingly, mine.

Stay tuned…

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