Wednesday, July 11, 2012

The Cruise goes to Athens, Greece- Our "Special" Europe Vacation, 3


May 13, 2012
Something I ate yesterday did not settle well with me,  I think it was a short bout of food poisoning.  I woke up in the middle of the night feeling quesy and thought it was me feeling motion sickness from the cruiseship.  But I had to run to the toilet and needless to say, I had waste coming out of me from both ends.  It was ugly!  Kevin seemed to have something bugging him too as he said he was fighting a fever and couldn’t regulate his body temperature.  He was thinking it was the canoli he ate after lunch in Taormina.  He and I shared it a bit.  It must have been it because, luckily, the rest of the family did not get ill, because we all ate nearly the same food in the same dining hall for dinner.
We both just about laid up in bed most of the day.  Fortunately, with Monica around, she was able to take care of the boys.  She’s been tremendously helpful with the boys.  Being a mom herself, Monica, seems to enjoy the interaction of the brothers and doesn’t mind caring for both of them. 
Fortunately, our day of illness was a day at sea for us.  So we didn’t miss any shore excursions.  It was a chill on the ship day, and we sure needed it.  In the evening we got dressed up for the first formal night of the cruise.  Cruises have these formal nights where all guests can dress up and take formal studio-like pictures before or after dinner.  You then have the opportunity to buy the photos at an inflated price.  The photos can be nice momentos for the guests and they also turn out to be pretty good money makers for the cruiseships.


May 14, 2012
Today we docked at Athens, Greece.
We saw the old Olympic stadium which was made entirely out of marble.  It's roped off and people are not allowed to walk into the stadium but can take pictures from the outside.  We also went to the Acropolis and it was such an amazing site.  Lucky for us, they had a special lift (elevator) on the side of the mountain and Aidan and I rode up that to get to the top of the Acropolis.  The rest of the family 
The special lift chair at the Acropolis

Aidan at the Acropolis

walked up the stairs to the top.  It was very cool that they added something like that.  Once we got to the top though, Kevin backpack-carried Aidan because the ground was gravel and quite uneven.  But, I thought it must have been a nice change for Aidan to have the same view we always have at our eye level.  He seemed to enjoy himself.  After taking many pictures at the top, Aidan and I rode back down the lift again while the rest of the family took the stairs down.

The Leungs in front of the Parthenon

The Leung Boys with full view of the Parthenon
We went to lunch in town and Aidan fell asleep.  He got in a good long nap during our lunch.  He’s had difficulty adjusting to the time difference and I think all the activity moving around and seeing things really tires him out. 
We also walked around town.  Our guide took us to the top of a hill and we had a beautiful 360 view of Athens.  The city is so tremendously dense.  Building after building all around, but no skyscrapers.
Athens, Greece

Monday, June 18, 2012

Rome & The Celebrity Equinox- Our "Special" European Vacation, 2

May 11, 2012 -- Rome, Italy

We had breakfast at our hotel in Rome.  As we walked around the hotel with Aidan, we got several pleasant smiles and remarks from the hotel staffers.  I would even hear many remarking in Italian, "Que bella!" (meaning "So Beautiful").  At the breakfast buffet, the very nice Italian cook guy came over to our table just to greet Aidan, and said "hi," and touched him, saying, "Bella!" (beautiful).  It was so nice to get such a warm and happy greeting from the Italians.  Surely, they have not seen too many children in wheelchairs out and about in Rome, and yet the Italians still greeted Aidan with a friendly smile...rather than the awkward stare that we so often get here in America.
With Grandma and Grandpa Leung at the Trevi Fountain, Rome
Kevin had arranged a private van and tour guide to take us to see the Trevi Fountain, Pantheon, the Coliseum, The Vatican at St. Peter’s Basilica, and the Sistine Chapel.  Since we had a good size party (7 of us), and for the convenience of getting Aidan in and out of transport, we figured private transportation and tours made things easier and more flexible for us.

At the Coliseum, Rome
To navigate easier through the big crowds and some stairs at the Sistine Chapel, we backpacked Aidan.  It was so cute to see Connor insisting on holding Aidan's hand while he was in the backpack.  It was one way to keep him close while wading through the crowds of tourists.  Having the private tour guide was great too, because she took us through some shortcuts which made things more accessible and saved us a lot of time and avoided the crowds.  I was really pleasantly surprised by the overall warmth and friendliness of the Italians towards Aidan.  So many of them would smile at us and were wanting to talk to him and not afraid to touch him and remarked how beautiful he was.

Walking thru the Sistine Chapel, Rome
After the quick tour of Rome, we setoff to board our cruise ship, the Celebrity Equinox.  This would be Aidan's 3rd cruise!  The first cruise we did was to the Caribbean, when Aidan was about 2 years old, before Connor was born.  The second cruise we did was to Alaska in 20007.  Aidan was about 4 and Connor was about 2.  Cruises seem to work well when you have kids and you want to see a lot of places in a short period of time.  You don't have to worry so much about logistics and everything is self-contained on the ship.  These cruise ships are truly marvels on water…a virtual floating, moving city on water.   Our Celebrity Equinox ship had 16 decks, about 6 different restaurants, 3 swimming pools, a casino, a running track, a basketball court and a full service spa.  Our suite was quite large because our travel agent upgraded us for free.  It even had a grand piano in it!  Lucky for Connor, he could continue his piano practice while on the cruise.  So we've gotten used to needing more space to navigate Aidan around and for overall comfort.  

The big Leung clan boarding our cruise ship, Celebrity Equinox

May 12, 2012 -- Messina, Italy

Our first port of call was at Messina, in the Sicily region of Italy.  We took a group bus ride to Taormina.  We walked around the town and the tour guide took us all to a restaurant that had a flight of stairs and no elevator.  I rather figured most of Europe would be like that since the country's origins were much more older than America.  So we carried Aidan and the stroller, separately, down the flight of stairs.  The restaurant was on a cliff side so it had a beautiful view of the ocean beach of the town.  We had lunch and traditional Sicilian pizza.  Connor loved it, thin and crispy crust the way he liked it.  We also had the first of many gelatos in Italy.

On board the Celebrity Equinox
Strolling thru Taormina, Italy
Taking in the view at Taormina, Italy
I had the tour guide save the first few seats on the bus for us so that it would be easier for us to carry Aidan on and off the bus..  But, apparently he had saved the very first seat which had a divider bar and made the legroom rather a tight fit for Aidan’s Special Tomato chair.  Monica said it was quite an uncomfortable ride.  We re-boarded the ship in the late afternoon.

Tuesday, June 5, 2012

Our "Special" European Vacation, 1


Kevin and I love to travel and see new places and experience new things.  Fortunately, we’ve been able to go to a lot of places and bring Aidan along with us too.  Thus, I thought it might be interesting to do a chronicle of one of our trips from the perspective of being Aidan’s mom and how it is to travel with a special needs child.  This is a chronicle of our trip to Europe, doing a 10-day cruise with stops in Italy, Greece and Turkey; then spending a week in Tuscany, then 3 days in Paris.

May 9, 2012
All of us, party of 7 (Kevin, me, Aidan, Connor, Grandpa & Grandma Leung, and Monica (Aidan’s home aide)), got to the airport early and we checked our 10 pieces of luggage in at the counter.  Mine and the boys’ luggage totaled 7 of these pieces.  But, probably 3 of the bigger pieces of luggage were Aidan’s gear and supplies.  I had to pack about 5 ½ cases (109 cans) of Aidan’s formula.  It’s not the kind of kid formula that you could just buy in a drug store, like Pediasure (which he previously took).  It’s more specialized and rare.  On other trips, when Aidan was younger, I could bring the powder concentrate formula, or we could buy it at our destination, but no such luck with his current formula (Nestle Pediatric Compleat).  We did look into shipping it over to Europe, but it was going to be much too costly, so I had to pack it in the luggage.  In addition to the formula, I packed diapers, bed pads, chair pads, the suction machine, the nebulizer machine, medications, swim clothes, everyday clothes, and other gear.  Anticipating that there would surely be parts of Europe that were not wheelchair accessible, I bought a soft backpack carrier so that we could backpack carry Aidan in the areas we couldn’t push him.  I got the Boba Baby G3 carrier, which was the highest rated carrier for bigger kids.  When we tried it out at home it seemed to work pretty well for Aidan.  I hope it does.  Luckily, it’s a soft carrier, so it packed down small and light. 
At the airport, we proceeded to make our way thru security.  I went thru with Monica and Aidan.  Kevin went thru with Connor and his parents.  I was armed with a doctor’s note for the feeding pump and formula to justify the need to get the liquids thru security.   As usual, Aidan had a male do a pat-down check on him and they had to swipe the stroller and the feeding bag and run it thru the machine and they all cleared.  Knock on wood – we’ve never been hassled about getting Aidan’s feeding bag and the cans of formula thru security.  Maybe we don’t look suspicious enough.  But, in my experience, LAX is one of the more careless airports in terms of security. 
We all made it thru security, had some time to kill before boarding so we headed to the lounge.  Fortunately, because the four of us were flying in the Virgin Atlantic’s Upperclass (sorta their First Class), we were able to also bring in Grandma, Grandpa and Monica into the lounge.  Wow! I only recently discovered the glory of this high-end type of waiting in these secret, tucked away VIP airport lounges.  There’s free food, internet, TVs, even showers?!  I know some airport lounges even have massage and haircut services.  What a completely plush way to wait for your flight?!  We had a full meal while waiting and looking down at the rest of the drones sitting in the uncomfortable chairs outside their gates.
We always push Aidan in his stroller/wheelchair all the way up to the plane, and gate check his travel stroller.  I bought another special lighter, collapsible umbrella type stroller (Maclaren Major) that folds and is light and also holds Aidan while seated in his Special Tomato seat.  I love that Special Tomato seat!  It’s probably the most versatile, cost-effective piece of equipment we have for Aidan.  We use that chair on the airplane, on the beach, in the hotel bathtubs and more.  It is so multipurpose and you can just hose it off with water and wipe it clean.  I had coached Monica on the procedures for the collapse and tear down of the stroller, diaper bag and the accessories.  Kevin will pull Aidan seated in the Special Tomato chair off the stroller, then one of us has to collapse the stroller down and take the diaper bag and accessories off and on to the plane.  Aidan gets seated in his Upperclass seat and we trickle in with all the stuff.
After we got in the air and leveled off, we folded down the Upperclass seat into a bed, and Aidan slept comfortably for just about the entire 10 hour flight?!!  In comparing the seats in Coach, where Monica and Grandparents were sitting; I could not imagine how excruciatingly uncomfortable it would be to have Aidan seated back there.  In fact, seated in his Special Tomato chair, Aidan probably wouldn’t even fit, or rather he’d be seated really upright which would be really tough for him to tolerate.  Surely, his knees would be rubbing up against the seat in front of him.  Considering how well Aidan and Connor both slept on our outbound flight in Upperclass, we may have to travel first class all the time, at least for International flights.  But, what a shame that its nearly 3 times the cost of a Coach fare?!  I know a mom that travels with her teenage special needs child and has to always travel first class because his special car seat wouldn’t fit otherwise.  I don’t think there is a discounted disabled or handicap airfare?
We arrived in London and had to get on our connector flight to Rome.  We boarded in the usual routine.  Aidan in his Special Tomato chair, but this time we got questioned a bit about it.  The stewardess wanted the Tomato chair to be able to strap around the airplane chair, but the straps were too short.  The straps couldn’t reach.  However, we did and always are able to buckle Aidan in on the lap with the airplane seat belt buckle.   Kevin strongly stated to the stewardess that Aidan always flies in this manner and stated that we had a doctor’s note for his own safety he had to be seated this way.  I had heard some horror stories from other parents about them getting really hassled about having their special needs child sitting in non-FAA-approved seats, even with a doctor’s note.  I was armed with our doctor’s note explaining that Aidan had cerebral palsy and needed to sit in his own chair for proper support.  I dare any airline personnel to try to hassle us or kick us off or take Aidan’s special chair away from him.  How could they even dare when I had a doctor’s note saying that he had to sit that way?  Any personnel looking to hassle us would have to bear the wrath of Kevin.  It’s not a pretty site.  Don’t hassle a lawyer and his special needs child while they’re traveling.  It won’t be pretty.

So we got settled on board, mostly trouble-free.  I sat with Aidan and Kevin sat with Connor and Grandparents and Monica sat towards the back.  I showed Aidan the emergency exit card and talked to him about where we had been and where we were going.  Apparently we mistakenly sat in the wrong seats.  But, fortunately it was an older lady traveling on her own and she just sat somewhere else.  The short flight went without incidence, except two occasions where Aidan nearly vomited.  Nothing unusual for him, but we’re now prepared with disposable vomit bags. I went on Amazon and bought 4 boxes of vomit bags.  They’re hugely helpful for travel.  Catch the vomit and just throw it away.  We used to catch the vomit in a towel, but then it was always a puzzle what to do with the dirty towel, which inevitably wouldn’t catch all the vomit.  So we are wiser now, with the disposable vomit bags.  Thank goodness for the all-encompassing Amazon.com!

As we started to deboard the plane, the older lady remarked to me, “You’re wonderful,” I believe it was a commentary to me and Aidan.  It was a nice acknowledgement for work that is no big deal to me…just caring for my boy and making the best of things.
De-boarding this plane turned out to be a tough one.  It did not pull right up to a terminal and didn’t have the covered walkway to the gate.  We had to walk down the stairs of the plane onto the ground.  This is always a little tricky with Aidan because we have to carry him down the stairs.  And Kevin usually does it, while I am trying to get ahead of him and get the stroller from the plane and set it up so that he could set Aidan down.  This got a little hairy because we had so many little bags and accessories from the stroller.  I, carrying the little bags, and wrangling Connor had to run and set them down in the shuttle bus and order Connor to not move, leave him unattended and then run back to get the stroller set up for Kevin.  But, he had to leave Aidan unattended to get the stroller and the bag, come down the stairs from the plane, leave it for me, then ran up to get Aidan and bring him down the stairs.  These types of airplane unloading are the most stressful and worrisome.  We’ve had that happen in the rain before in Anguilla.  Coming down the stairs carrying Aidan in the rain and pushing the stroller running into the airport terminal.  Not fun, not to mention Not Safe!
Well, we all made it together with all of our luggage and gear in tact.  Hello Rome!  Or shall we say Ciao, Roma!

We finally made it to the hotel in Rome.  Monica gave Aidan a bath using the Special Tomato chair (Love that chair!) and Aidan was set up on the sofa.  And fell fast asleep.  These sleeping arrangements worked out great because grandparents were in the adjoining room, and Connor was able to sleep on a sofa in their room. And Kevin and I did not have to share a bed with the boys nor did any of us have to sleep on the ground.  Nice and comfortable.  Tomorrow we all go see the Coliseum before we board the cruiseship.

Sunday, March 4, 2012

Student of the Week


Aidan was Student of the week in his class.  As Student of the Week, the student presents an "All About Me" poster to his class.

Aidan's "All About Me" poster
He told his class that his Favorite Thing to Do was "watch Dancing with the Stars."
And When he grows Up he wants to be "A Judge on Dancing with the Stars."

Aidan and his aide presented his poster to his class
The rest of the class has to draw and write something about Aidan, since he was the Student of the Week.  I loved seeing the cute drawings and really interesting things his classmates had to say about him.  The sentiments are so sweet and insightful, yet naive and innocent.

Translation: "Aidan! You are a good friend to me! I hope
you will be on Dancing with the Stars one day.  I hope
 you will talk and walk one day."
Translation: "Aidan is nice because he is friendly.
Aidan is a good person. Aidan is sweet. Aidan is nice
to everybody."

Translation: "Aidan is cool. He is awesome. I like him.
He is nice. He is really lucky that he doesn't have to walk."


This kid really has no idea how truly lucky he is. Connor has said this once before, when he was lazy about having to walk. I snapped at him and said, "You don't even know how lucky and privileged you are to be able to walk?!" Like anything else, you don't know how lucky you are to have something, until you don't have it or its taken away from you.

Translation: "Aidan is always very happy. He is also
very funny. And nice and smart! and very cheerful!"
Translation: "I am sorry that you are in a wheelchair but
I wish that you can walk and talk. I love you."


Translation: "I think Aidan is nice. He is a good friend
to others. He is very special because everybody
cares about him."


Translation: "Aidan is very nice. He is good in math.
Aidan is my best friend. Aidan is a very cool person."

This kid keyed in on the fact that Aidan loves numbers! Aidan loves hearing numbers of any kind...telephone numbers, weights, prices, temperatures...any and all numbers!  Aidan is a numbers nerd!  :))

Tuesday, December 20, 2011

The Little Known Benefits


It should go without saying that parenting a disabled child has more than its fair share of challenges. But, what I don't think a lot of people realize is that there are some advantages to it.  Below I've highlighted a few of the little known advantages of parenting a disabled child as compared to a "typical" child.  It's a tongue-in-cheek description and strictly from my own perspective as Aidan's mom.  To fully understand and get the humor of this, it helps to know that:  Aidan has very little volitional movement; he needs complete support and assistance with any and all movement; and he is completely non-verbal but does make vocalizations.

The Good Stuff
  • I could leave Aidan in one spot, turn my back and he would still be exactly where I left him.  Contrary to my experience with Connor, whereby at about 5 months old I had set him down on the futon, turned my back to set up the spot for the bath, and he had rolled off the futon already in a matter of 5 seconds?!  Oops, I didn't know he could roll that fast?!  Aidan at age 8, still can't independently rollover.
  • Aidan doesn't talk back to me and won't repeat expletives that I might have accidentally let slip.  Connor, on the other hand, often argues with me, whines, complains, and negotiates his way.  It's a proud parent moment when you hear your 5 year old say, "Oh sh*t! I left my Obi-Wan action figure at Thomas's house!"  And I'm not even the potty mouth of the family?!
  • I've developed an acute sense of hearing as Aidan's mom.  He rarely sleeps solidly through the night so, I've become accustomed to being awakened at least once every night.  This could be because of my heightened sense of hearing that I've developed.  While sleeping, I could hear Aidan cough from across the hall and be awakened.  His low pitched yelps and cries make me leap out of bed.  Contrast that to Kevin, who couldn't be woken up with a screaming crying baby hollering into his ear.
  • I've developed a muscular figure now.  You can't help but build muscle from the constant lifting and carrying him.  Fortunately, I was a tomboy growing up and am fairly athletic so I consider myself physically strong.  But, being Aidan's mom has sort of forced me to take better care of myself and my body, knowing that I've got to physically care for him for a long time.
  • I've learned more about medical care and medicine, I could practically be an M.D.  Aidan requires different medications, mostly to alleviate his very stiff muscles and for his gastrointestinal system.  Fortunately (or maybe not?), Aidan is fed by g-tube which feeds directly into the stomach, thus this is how all his medications are given.  This is so much easier than trying to feed them into his mouth.  All parents know how difficult it can be to feed their "typical" children medicine, especially if it tastes bad.  You have to pull out all the trickery and plead, bribe, and sometimes use the old fashioned pin-them-down-and-pinch-the-nose trick too.  Although, I really am far from knowing enough about medicine.  But, what I do have is my specialized doctorate degree, magna cum laude, in my study of Aidan.
Often times, I get the sympathetic and pitiful "It must be hard [to care for him]" look from strangers. When sometimes I think they really have no idea, that in many ways, parenting Connor is often as challenging, and sometimes more challenging than parenting Aidan.



*Certain names have been changed to protect individuals' privacy.


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