Road Tripping
July 30, 2014 - Leave a Response
We just returned from a five day road trip…We planned to meet some friends who were going to visit the Grand Canyon, driving from Boston. We decided to do a couple of nights in Las Vegas on the way and then hook up with them in Williams, AZ to take the train to the Canyon together. It was a great trip and the Canyon is spectacular.
But the stress leading up to the trip was palatable. There are so many unknown factors that we stress over when making travel plans, even just to a new friend’s house, that sometimes it feels easier not to go to new places. We never make that choice but the pre-travel unknowns definitely take their toll. Accessibility, where and when to feed Cole, where and how to attend to his personal needs, all the things that make our travel a little harder, and a little different.
Turns out we’re a capable team, trio. Yes, we have to scope everything out and plan for the worse, but when put to task, everything worked out fine. We spent two fun filled days in Las Vegas, frolicking on the Lazy River and enjoying some fab meals. We traveled to Arizona, road a train and explored the Grand Canyon and then power drove back to California all without incident, embarrassment (well, Cole might have something to say about that – it turns out that our almost teen would prefer to vacation in future with a friend in tow. The parents are not satisfying enough! Even the addition of a grandma is preferred to just the parents – how utterly typical of him.)
The Grand Canyon was amazing and even more spectacular than you’d imagine even having seen pictures, flown over it…It’s breathtaking. We explored during day light and then returned for sunrise the next day. Definitely an experience. The whole trip was a great experience and it showed us that with some foresight and planning, anything is possible and there’s no reason not to heed adventure with the boy. We can make anything work.
His dream is Paris. I’m determined to make that a reality…maybe for middle school graduation!
CREATURE COMFORT
July 21, 2014 - Leave a Response
I have a confession to make. I can’t seem to get my son to sleep in his own bed. He’s done it successfully for long bouts of time throughout his twelve years but he’s once again managed to wrangle the coveted spot next to me and seems determined to stay there. Despite his considerable desire for independence in other aspects of his life, this comfort is one he refuses to give up. At least without a big fight…
I don’t have the bandwidth to fight it. I chose my battles as wisely as I can and I know this is one where if he digs his feet in deep enough, I’ll lose. I know somewhere in my mind that he’ll grow out of it again too. I know he wants to be near me because my work hours are such that he sees very little of me during the week, and he misses it. I miss it too which may contribute to why I’m not fighting this right now.
We talk about it often and he looks at me with amusement when I tell him that soon he’ll be moving back to his room. He looks admiringly around his room, which was recently redone for him so that ‘s a bit more grown up and very tranquil. He likes his room. Just not sleeping there. Perhaps just not sleeping there without me.
I’m honestly not sure what comfort he gains from sleeping with me. Most nights he sleeps peacefully through the night and wakes for a quick morning cuddle, something we used to do his in room when I’d come wake him up in the mornings. Those nights where he’s restless or sleepless, I’m up with him, but that too happens wherever he’s sleeping.
Part of me wonders if it’s simply that he’s got my attention if we’re together, alone, and he’ll take it however it comes, which makes me a little sad.
THE PACKING LIST
July 18, 2014 - Leave a Response
Traveling is not always easy for any family and with ours it presents odd challenges in that my son is in a wheelchair, needs certain privacies for his personal business, and is fed through a g-tube. Highly challenging on long flights, less so on long road trips, but I’ll never shy away from the chance to share new places, adventures and experiences with him. Organization is essential because some things he needs are not easily procured on the road or in another country. We ship things when we visit my in-laws for example, and I make big lists when we hit the road. We’re heading for the Grand Canyon next week. I feel prepared which helps me to actually relax! Here’s my packing list:
2014 SUMMER ROAD TRIP – PACKING LIST
DOCUMENTS & ESSENTIALS
o AAA Card
o Cash
o Credit Cards
o Driver’s Licenses
o Hotel Reservations
o Keys
o Map
o Proof of Insurance
o Train Reservations
o ___________________________
o ___________________________
o ___________________________
TECHNOLOGY
o Canon Camera & Battery Charger
o Car Chargers
o Extra Camera Batteries
o iPads
o iPhones
o Jambox Mini
o Laptop Cords/Chargers
o Laptops
o Memory Cards
o Nook & Charger
o Point & Shoot
o Thumb Drive
o Wall Chargers
o _________________________
o _________________________
o _________________________
ENTERTAINMENT
o Books & Magazines
o DVDs
o Pens & Markers
o Playing Cards
o Playlists
o Stamps
o Stickers
o Travel Games
o Travel Journal
o _________________________
o _________________________
o _________________________
TOILETRIES
o Cetaphil wipes
o Conditioner
o Deodorant
o Eye Glasses Wipes
o Face Scrub
o Fragrance
o Hair paste
o Hairbrush
o Kleenex
o Lip Balm
o Lotion
o Make-up
o Moisturizer
o Nail Care
o Razors
o Shampoo
o Soap or Body Wash
o Toothbrushes
o Toothpaste
o Washcloth
o __________________________
o __________________________
o __________________________
o __________________________
FIRST AID & MEDS
o Aleve
o Anti-itch cream
o Band-Aids
o Blister Care
o Children’s Benadryl
o Children’s Tylenol
o Disinfecting wipes
o Neosporin
o Prescriptions
o Sun Screen
o Tweezers
o Tylenol
o Vitamins
o _________________________
o _________________________
COLE’S SUPPLIES
o Bags – 3
o Changing Pad
o Diaps
o Extra Mic-Key Button
o Extra Extension Sets
o Formula – 24
o Lap Towels
o Lube
o Pads
o Tubes
o Tummy Towels
o Wipes
o _________________________
o _________________________
o _________________________
COLE’S CLOTHES
o Hat
o Jeans – 1 pair
o PJ’s – 3
o Rash guard – 2
o Shoes – Sneakers & Toms
o Shorts – 8 pairs
o Socks – 6 pairs
o Sweat pants – 3 pairs
o Sweat shirt – 2
o Swimsuit – 2
o T-Shirts (Long sleeve) – 4
o T-Shirts (Short sleeve) – 8
o Undershirts – 6
o Undies – 6
DAN’S CLOTHES
o Bathing Suit – 2
o Hat(s)
o Jeans
o Pj’s
o Rash Guard – 2
o Shoes
o Shorts
o Socks
o Sweater
o Sweatshirt
o T-Shirts (Long Sleeve)
o T-Shirts (Short Sleeve)
o Undies
CYN’S CLOTHES
o Chinos – 1
o Cover-up
o Hat(s)
o Jeans – 1
o Lingerie
o PJ’s
o Rash guard – 2
o Shoes – Sneakers, Flats, Sandals
o Shorts – 2
o Skirt – 1
o Sweater
o Sweats
o Swimsuit -2
o T-Shirts – 4
o Tanks
o Umbrella
o Umbrella
JUST THE TWO OF US
July 17, 2014 - Leave a Response
My husband travels a fair amount for work, and sometimes for pleasure. Today he’s making a long weekend visit to Vancouver for a boys weekend with his best buddy who’s coming from Baltimore. Life long friends getting a rare few days to pack in some quality friend time.
His travel leaves me as the lone parent, caregiver, creator of fun activities, and master of distraction for my son. It means juggling my work day so I can get the boy to school (summer school in this case), and then pick him up at the end of the day from camp, or to find a willing chaperone for the day. It means getting us both up, him fed, lunch prepared and packed, me showered, both of us dressed, him sunblocked, braced and shoed, settled in his wheelchair ready to start the day, and on his way either with me or with said chaperone.
Then off to work for me and reverse the events. It sounds daunting but strangely, when it’s just the two of us, it all goes more smoothly than when my husband is there taking on most of the morning prep since I tend to take longer to get myself ready than he does.
I dawdle. I review emails to get a jump on the work day. I sip coffee and visit with Cole while he has breakfast. Take my time applying a little make-up, and then help with some of the boy prep…I always do braces and shoes.
When it’s the two of us alone, I am a machine…I get everything prepped, shower, dry my hair, swipe a little lipstick and dress all before he’s even finished his breakfast. Lunch gets packed and backpack checked and Cole is sunscreened, dressed, and we’re out the door on time, where we need to be on time. And it all feels easy and manageable.
Perhaps having just one of us to answer to and rely upon is easier than dealing with the two of us. He knows that even with me running around he has my full attention, which he seems to crave. For me, I know that I’m the only one who’s going to be taking care of him, addressing his needs, so I’m more proactive and on top of things. I feel like it would be quite a feat to manage to find a balance when it’s the three of us in action. It generally works okay but there are fits and starts that throw things off. Something to work towards…
Five Minutes
July 16, 2014 - Leave a Response
Time is one commodity completely eludes me. Despite my efforts to stretch the given twenty four hours each day, I find that they’re eaten up by little bites of five minutes. My husband is traveling so I’m solo for the next coming days and the bites have become very defined: It takes five minutes to wake and unwrap the boy (he sleeps in bracing), five minutes to get him settled and find a TV show for him to watch, five minutes to get his breakfast ready and coffee brewing, five minutes to run through the sixty emails that have arrived since bedtime, five minutes to collect and start a load of laundry, five minutes to toss the ball to the dogs so they feel the love, five minutes to take a quick pass at cleaning up the kitchen, five minutes to get the dogs fed and to ply me with coffee, five minutes to shower, five minutes to dress, five minutes to dry my hair, five minutes to attempt pretty, five minutes to collect the dynavox, homework, lunch and pack it all up in the car, five minutes to make up the beds and wipe down the bathroom counter, to get the boy changed and dressed, five minutes to do braces and shoes and get him set in wheelchair, five minutes to get him tethered into the van and get the music set up and us ready to leave for school…and we’re off…
Don’t get me started with the bites taken commuting in traffic. Yesterday I drove the boy twenty minutes north to school, returned south for an hour and forty five minutes to work, and then in the afternoon an hour from work to pick him up at school and twenty minutes to home…Over three hours of my days wasted driving. Oh how I wish the commute was just five minutes!
Driving Lessons
July 16, 2014 - Leave a Response
My twelve and a half year old son has started driving lessons. No, not those driving lessons – power wheelchair driving lessons! It coincides with the car driving lessons my nearly sixteen year old niece is taking right now. Both kids are more excited and far less nervous than I felt at the prospect of getting my driver’s license way back when.
I didn’t like driving and was among the younger of the girls in my gaggle of friends so I didn’t feel the lack of freedom that driving would afford. I had willing friends to get me wherever I needed or wanted to be without the hassle of having to drive or worry about getting a car. I was nearly seventeen when I finally dragged my mom to the DMV for my driving test, which I passed handily, though I still had little interest in actually driving! To be honest, I’m still not a fan.
Today though, my son and niece are both anticipating the independence and freedom that will come with their success at driving lessons. Both are taking it seriously and enthusiastically practicing with the intention of having the ability to take off on their own once they’re, for my niece licensed, and for my son approved for a power wheelchair.
For him it will mean he’ll have the ability, for the first time in his life, to move himself entirely by choice and to places entirely of his choosing. His free will is somewhat trapped by his own body and by the obedience of his parents, caregivers, and friends who fall in the charge of pushing his wheelchair to the places he needs to be or where we want him to be, but not always or necessarily to where he chooses to be.
It’s hard to fathom what this new freedom will feel like to him.
Transitions
July 1, 2014 - Leave a Response
Transitions are always difficult and stressful on the boy. He doesn’t discriminate between good change or bad. He just doesn’t cope well with any end and beginning. I know this is not limited to special needs kids, but in his case, the only case I have personal experience with, the fact that he cannot vocalize his concerns means he internalizes most of his fears. It results in sleepless nights, clingy behavior (mom in particular is a security blanket), and grouchy behavior. It also results in reverting to comfort TV and music.
I try to consider all of the things that might be going through that beautiful brain of his so we can talk about it together. I want to quell his concerns and address any fears he has so he can move past it without it having to much effect. I try to anticipate the sorts of things that will cause him stress. Sometimes I’m successful. I’ve considered having him see a therapist. There are therapists who work with non-verbal kids…Something I’m a bit mixed on because I don’t exactly understand how they can interpret the feelings of someone who can’t speak and with whom the therapist has little to no history with. I’ve spent his whole life trying to understand how his brain works and what he thinks about life. I’m not all that successful at it. At least that’s how it feels sometimes.
Summer is full of transitions for the boy so there’s a lot of disrupt in our lives. The school year ends. Summer starts. A couple of weeks of cooking camp. Then summer school and day camp in the afternoons – four weeks of this so there’s hope for some calm after a week! We’re taking a little family road trip to explore the Grand Canyon. And then two more weeks of camp until…School starts again…Whew. I’m already excited for the new school year. It brings with it the promise of peace.
Two years and a half years goes by…
June 30, 2014 - Leave a Response
Talk about procrastination! Two and a half years ago I attempted to write frequently and to share the wild ride we call life with our almost teenage son who has cerebral palsy (non-verbal and non-ambulatory). A little background…He came into this world without a breath. It took twelve minutes for him to take his first breath. I don’t know if that essentially means he was born dead, and came to life, or what? It always strikes me as odd. He fought crazy odds and left the hospital with a g-tube (still has it), weighing over ten pounds, and a lot of uncertainty. We welcomed him home with lots of love, determination and the desire to give him the best life. He’s been through surgeries, lots of therapies, and more doctor’s appointments than most people have in a long lifetime. He handles it with grace (usually).
He’s been part of inclusive education since he was a year old, and is now going into 7th grade. He’s on honor roll most school years and spent the last year getting to know Tobii, an eye gaze speech output device. He’s happy to use it at school, but still prefers to use the language we have developed over the years of him smiling, frowning, occasionally uttering words, and us mostly guessing…I think it amuses him, until it doesn’t, and it’s tiring to use Tobii all of the time, especially after long school days. He’ll get there. He uses a gait trainer at school too, and prefers to play baseball on his feet, with adult support. We were told he’d never walk but he runs with help, or in his gait trainer…and dances! HE LOVES DANCING.
Because he’s always known inclusion, and has never been segregated because of his disabilities, he doesn’t really identify with kids who are similarly abled to him. You have to like the things he likes or something that interests him to learn about. He surfs, skis, plays baseball and is now interested in volleyball (the girls are playing at school so there’s motivation to play). He loves music, swimming, dancing, and cooking. He eats very little by mouth, and decided some time ago that he’s a vegetarian, though he’ll nibble on sushi. He finds comfort watching old Nick shows that he loved when he was little (Little Bill, Blues Clues) but he also loves Ellen, Dog with a Blog and About A Boy. He’s like that with music too…He’ll listen to Weezer and Coldplay and One Republic, but then when he’s feeling tired or anxious, he wants things he loved when he was small like Ralph’s World and They Might Be Giants. His brain is a curious place.
He likes to travel and is desperate to see Paris. I’m not sure why exactly but it may be my influence as it’s one of my favorite cities. I came back to this today because we’re gearing up for the family summer road trip. We’re visiting the Grand Canyon, first time for all three of us, at the end of July, and are taking the long way there with a couple of days in Las Vegas…We’ve heard the Lazy River is a must do for kids so we thought why not. Brights Lights and then one of the most magnificent sights in nature…a great contrast in just a few days! Travel with the boy is always interesting. We’ve grown pretty adept at making just about anything work.
We might do things differently but we’ve really never not done something we really wanted to do. I’ll never put him a position of not trying to make something work. I’ll never short change him of an adventure or experience if he’s passionate about it.
Back to School
August 8, 2012 - Leave a Response
The start of school means the end of summer despite the temperatures hitting over 105 degrees in the Valley where we live. The boy returns to school on Monday. He’ll be starting the 5th grade. I had a flash this morning while unloading my drycleaning of him nestled in the baby bjorn smiling at the drycleaner while I did the same unloading eight or nine years ago. Nothing made me happier than to have him with me in the bjorn. I kept in it until his feet practically touched the ground. I couldn’t bear to not have him so close…
Monday he’ll be a 5th grader. Big man on campus in the elementary school. Still doing his best to maintain his status as the unofficial welcoming committee to the school. He has managed the art of providing comfort and security to new students, younger students, and troubled friends. He’s proven to all that he’s a good, caring friend, who can laugh with the best of them, and make the best of them laugh. All without saying a literal word. He’s amazing.
The big curiosity is who will be in his class. All of the kids are desperate to know which teacher they have and more importantly which friends will be in their class. We know the boy’s teacher so his interest in the classmates. One of his girl friends told him recently that she hopes her class is all girls and only one boy, him. She said, because you are magnicificent! He beamed. It’s his new favorite word, along with “zucchini”.
We have a team meeting this week, before school even starts, which makes me feel very positive about the direction this school year will take. He’s got a new gait trainer waiting for him that provides better head support so that he’ll be able to walk more purposefully and hopefully for longer periods of time. Perhaps he’ll even be able to play baseball in it! He’s going to be trying some new communication devices – an eye gaze voice output, and a couple of others, in search of the best device to enable him to “talk” as quickly as he thinks. Starting out with a team meeting before school even starts will make the transition smoother and give the boy an opportunity to check out his class and new teacher. It’s exciting, and even more so, encouraging.
I love your brain 