Archive for the ‘Special needs parenting’ Category

BLUE CHAIR
January 9, 2015

Try to imagine not having the ability hold your body upright to support sitting. Where would you sit? What kind of options would you have? The answer? Very few, and nearly all with straps and supports to keep you in place.

Cole cannot sit independently. He’s had scads of different chairs, starting with high chairs, strollers, chairs that clipped onto tables or strap onto chairs, and his wheelchairs – all seating devices that have straps to hold him in place.

In order to sit on a couch, or bed, independently, he’s propped up and wedged into place with heaps of pillows surrounding and supporting him. He can often get lost in the mix, slipping down or sideways.

It wasn’t until a few years ago we ran across the magical Chill Chair at an abilities expo that featured products of all sorts designed to enhance the lives of those living with disabilities. The Chill Chair (it definitely deserves capitalization!) is the first chair that Cole could sit in without straps or any additional supports. It looks much like comfy upholstered chair with a ottoman attached, except that the seat has a little indent for his tush, and the chair back sort of hugs him. He can sit with his legs up (his preference), or without the ottoman, bent downward. It’s amazing. It’s among the single greatest things we ever purchased for Cole.

We actually have two at the moment. We started to feel that he was outgrowing the first chair, so made the purchase of a second, larger size one only to find it was too big. One’s not quite too small and the other is quite too big! The upgrade includes a table tray that can fold away or be used to hold his Tobii (eye-gaze voice output communication device), or a tablet for listening to music or books, or his tray of Sand or a game…or whatever…It’s definitely a cool, smart addition. He just needs to grow a little more to fit in the chair! I suspect this one will take him quite far once he does fit in it. He’s not likely to be very tall. The Chill Chair rocks.

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DO YOU HEAR ME?
January 8, 2015

Listening is a great skill. It doesn’t come easy for many of us, and I’ve learned that I struggle with being an engaged listener. It’s not that I’m not interested to hear what someone has to say, but more that I spent many years living with just my own voice, and inside of my head, for much of the day and I still find myself getting caught up in the thoughts that accompany listening or in interrupting because of the excitement of conversation. It’s been years since I was a stay home mom, but it’s something I still struggle with.

I stayed home with Cole for the first seven or eight years of his life before getting back into the work force. Having a non-verbal child, and being around the silence, made me a very chatty mom. I talked to Cole constantly and responded in kind. The difficulty of that is that the reciprocal aspect of conversation disappeared from my daytime life. It’s hard to listen when you’re playing both roles. At least, for me it was.

I have trouble with interrupting as I’ve mentioned. I really do work on it but sometimes I catch myself talking over a friend or colleague and it’s too late to pull back. I end up feeling terrible and then sort of withdraw from the conversation as much as possible to prevent it from happening.

On the flip side, I likewise feel terrible when I feel like I’m not heard. It seems to come with the territory of marriage. I’m guilty of it as much as my husband is. Sometimes a person just isn’t up for listening. Sometimes it just takes too much effort but instead of kindly bowing out of a conversation or expressing the need for some solace or silence, we just pretend we’re listening, while actually tuning out. It’s not the kinder choice but in a strange way it seems like the more polite choice, even though it’s not.

With this is in mind, I intend to continue to make every effort to try to be a more active, attentive, and respectful listener, as well as to find better ways to better communicate when I know I’m not up for good listening. I think it’s okay to take a little time inside your head now and then. Sometimes listening to yourself is just as important.

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I READ A LOT
January 7, 2015

I love to read. I try to read every night even if it’s just a page or two, though more often than not I get lost in whatever book I’m reading and waking up in the middle of the night, having rolled over onto my tablet or book. I favor mysteries, especially international crime thrillers, but I like to mix it up with novels and short stories, and the occasional bit of non-fiction.

As I’ve written previously, my dad kept journals of his readings. I have one of his handwritten little notebooks detailing the readings of 1968. It’s something I treasure. I often think about doing the same thing but then I move on to the next book without recording anything about the last. Perhaps this year I’ll attempt to document my reading. It would be fun to look back at the list several years later and be reminded of where I got lost in 2015.

I’m currently reading The Paying Guests by Sarah Waters. It’s set in 1922 in England, post WWI. A formerly privileged widow and her unmarried twenty something daughter, finding themselves without means, have to take in tenants to keep their home. The tenants, a young married couple, change their lives, especially that of Frances, the daughter, in compelling ways. I’m only half way through and am enjoying it. I am, of course, looking for the thriller element, even where it doesn’t exist.

I have a tendency to build upon my readings in my head whilst reading. I imagine where the story might be heading and sometimes I’m right. Sometimes I’m not. I have a tendency to devour series and as I grow more familiar with both the author and the main characters, I can often take the journey one step ahead of the book. It doesn’t spoil it for me. It actually makes me feel more a part of the investigation or story.

I love to read with Cole too. I’m not great at voices but I sometimes try to give accents to characters or different intonations or inflections. He’s forgiving and when we find a book he likes, he’s a great partner and listener. I wish he could find it in himself to get lost in books the way I did when I was young. He’s got limited options for independent time, in the house, or in his room and reading would be my first choice for him. He can listen to books on Audible, or read on his tablet, using his eyes to turn pages, but he’s not embraced the escape of a good book. It’s my dream that he will one day understand the magic of a well told story.

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MONDAY, MONDAY
January 5, 2015

General laziness won out yesterday…some things were handled, but quite enough to make today feel easy. Surprisingly, Cole got off to school without any fuss or drama. Hopefully it’s the start of a good day for him. I’m sure seeing all of his friends, even those he saw over the break, will be good for him as well as simply getting back to the structure of a school day. Besides exercising his brain with school work, the physical exercise will feel good for his body. He’s much more physically active at school where he walks in his gait trainer daily, as well as doing some standing, and P.E. class.

My intentions of getting out of the house early did not quite happen. It’s the first morning in the house that I’ve had to myself since the middle of December and I spent the morning finding little things to tend to. I am the queen of dawdle. I can putter around, not exactly wasting time, but definitely not doing what I’m supposed to be doing, all morning if left to my own devices. My hope for a dawdle free morning has already been thwarted. The dog needed brushing, the house needed a little picking up before the cleaners come later (yes, I’m one of those people who straightens up for the cleaners), and the cat needed a little focused attention.

It’s not that I’m dreading work. I actually like my job and I especially enjoy my coworkers. I just like time to myself more, and it’s a rarity in my life. I’ve got so much stuff to take with me to work today. Among them, the under the desk elliptical machine, some homemade chia water, my new tea infusing tea cup, some loose tea, and a few healthy snacks for the week. I’m prepared to have a great start to the year in terms of wellness.

I’ve also tucked my $1 away for the first week of the year savings. There’s a challenge going where each week you put away an amount equal to the corresponding week. This week 1, $1, next week 2, $2 (total saving $3), etc. By the end of year I’ll have $1,400 saved without ever really noticing.

I’m looking forward to coming home tonight to hear about my guys’ days. That’s one of the nice things about all having different days, sitting together at dinner sharing our experiences and laughing together. I guess I should get my day started so it can end…

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SUNDAY MORNING
January 4, 2015

The Sunday before the end of two weeks off work and school…There’s competing desires to indulge in utter laziness and to end the break feeling accomplished and productive.

Thus far, the laziness is winning out although we’re into the second load of laundry and the boy has had a mani-pedi to get ready to return to school well groomed. (it’s only just 10:00 am and we didn’t get out of bed until 8:30 so maybe we’re slowly moving towards productivity).

Today is intentionally plan-free. No one in the family seems to be excited about the prospect of returning to the work/school routine, although I suspect that a day or two into the routine, we’ll all be happier. Much as I love having time off and enjoy the time together, it can be challenging to find things to do that satisfy everyone, unless there is some travel involved, which unfortunately was not the case this holiday season.

There are lots of things to get organized for both the boy and myself. I’m preparing some healthy, easy snacks for the work week, have to pack up my new under the desk elliptical machine, along with some new note books – an effort to stay on top of everything – and making sure I have a plan of action for the day. Two weeks off means a lot of catch-up, even with most of my industry being off too.

We also need to get the boy organized for the return to school. That means sorting through the backpack and binder and making sure everything’s current and any outstanding assignments are complete, packing up supplies for the week, and resetting the general mindset from vacation to school. That’s the trickiest part. The school year has been a bit rough so he’s no longer excited and eager to return to school – a first for him. Until this year, he truly wished he could live at school. He loved it that much.

More laundry, quick errands run, and we’re once again back home and trying to motivate to get the random things handled. Why is it that after having two weeks of holiday, this final day is the day when everything seems hard to do? It’s that dragging one’s feet thing, hoping to eek every last second of holiday out of the day. We can’t even motivate to take down the Christmas stuff. That will wait until next Sunday…

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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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LOOK AT GRANDMA
January 2, 2015

Cole and I spent the day with my mom today, just running a few errands and then taking her out to lunch. We often do this on the weekends and it’s become something both Cole and I really treasure. I love that he is able to have the opportunity to spend time with his grandma and to make memories with her. It’s easy to take it for granted but I think he values the time with her dearly.

For the first half of his life, she lived in Oregon and would come down to visit several times a year. She moved back to Los Angeles about five years ago and we’ve since grown into the routine of seeing her during the weekend. Usually, as with today, running errands and lunch. Nothing particularly special about the outings, but it’s time that is absolutely cherished.

Cole adores her and she him. They both delight in wandering away from wherever I am and getting into their own form of trouble. Cole has made it clear that in these weekend outings, I’m merely the chauffer, getting him to Grandma and responsible for taking care of the necessities. She’s the fun. It tickles me to no end that they have their special time. There’s nothing like Grandma time.

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NEW YEAR’S DAY
January 1, 2015

I welcome the new year whole heartedly. I often feel ambivalent about new years and the concentration of attention on resolutions and change. However, this year, I find myself embracing the opportunity to implement some changes, updates, and upgrades into my life.

2014 was a fairly good year. We did a little traveling – I finally saw the spectacular beauty of the Grand Canyon, spent a lot of quality time with friends and family, did a few impactful updates to the house that have made it a space where we enjoy our downtime, as well as entertaining friends and family, overall the work year was solid, and Cole has grown in ways that still surprise us – his new found desire to spend time alone in his room in typical teen fashion…wow!

With the advent of the new year, I have the urge to continue to become healthier. Thus far, that includes the purchase of an under the desk elliptical machine, as well as a standing desk so that my normally sedentary work day can become a more challenging to me physically.

I’m also keen to explore some new recipes to add grains and more fruits and veggies to my diet, and eliminate some of the processed products as well as sugar. Sugar seems to be the evil element as we age, not only internally, but it also ages our skin more rapidly. I still have weight to lose (managed to lose and keep off 23 pounds in 2014…hoping for more of the same in 2015), but overall wellness is my main reason for updating the meal plans. I can feel the difference in my body, well being and energy when I’m eating cleaner, and leaner. My immune system is stronger and my moods more stable.

Having a living, breathing backyard garden is something that will help with that. We built some raised beds last year but have yet to fill them with soil so we can start planting. 2015 promises to be the year of getting our gardening on. We’ve grown veggies in pots and various spaces in our yard over the years and have been inspired by our homegrown crops to create wonderful meals from our produce. To be able to have a seasonal selection of crops to be inspired by is a dream. And the idea of tending to and nurturing them strikes me as a wonderful way to relax and spend a little time outside (I’m in an office all days with minimal outside exposure during the week).

I’m also looking forward to experiencing Cole growing. He seems to be in a physical period of growth at the moment. The last couple of weeks of 2014 have had him sleeping a lot more than usual and also a bit grouchier. Both signs of physical growth. I’m interested to see how he expands on his independence and to see how his interests grow this year.

Of course there are countless other upgrades that I hope to make practice of – being better organized, being more thoughtful and kinder (especially to my husband who has the unfortunate brunt of my moods whether he deserves it or not – most often not), reading more, revitalizing my French (we intend to take Cole to Paris for his 8th grade graduation), writing more, being braver about putting myself out there (where exactly there is, I’m not sure, but I know I’m not there, yet)…

I am entering 2015 with optimism, hope and an overall sense that the year will be meaningful. To me, that includes some real change and overhaul.

I wish health, happiness, and hope to everyone in 2015. And a good dose of love. It makes everything feel that much more attainable. Happy New Year’s!

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MERRY CHRISTMAS EVERYBODY
December 24, 2014

For us, today is the day. It’s Cole’s favorite holiday of the year, perhaps his favorite day of the year. It’s also the most trying day because the anticipation of the evening (our Christmas Eve festivities begin at 5pm) has his every emotion heightened and his patience limited. Did I say limited? Non-existent would be more accurate.

Despite having celebrated Hanukkah with family, and his cousin’s birthday with family, as well as some other fetes, it’s all about tonight. Nothing compares to Christmas Eve at Uncle Dennis’.

I love that he finds it so joyful and that he loves it so much. I wish I could share just a speck of the delight he finds it with all of you. His happiness continues through into the New Year, which always makes the start of the year hopeful and bright.

With that in mind and heart, I wish all of you a bright, shiny New Year and much love during the holiday season.

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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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