Posts made in August, 2012

Everyone gets a seat, except May. Fair enough?

Posted on Aug 27, 2012 | 15 comments

Everyone gets a seat, except May. Fair enough?

This week, on BabyCenter, I wrote about a news item that featured a young lady with disabilities who was denied use of her iPad on plane. She can’t speak, so she uses it to communicate. Regulations meant she couldn’t have it – even if she switched it into airplane mode. There is a point when regulations cause more harm than good. A couple of weeks ago, I saw our luck take a turn for the better, but that is a very rare experience. In the post, I wrote about a time when United Airlines refused to let us use May’s car seat on a plane. The car seat is a popular brand and one that, I believe, is FAA compliant. However, on the plane, we couldn’t prove it, so they made May ride on our lap the whole flight – a far riskier proposition. I also referred to a time, on a flight about a year before this, when they refused to refrigerate her medication. Unlike on Mama Lewis, where people come to read because they are interested in May, on BabyCenter, people read me because they are interested in babies. They don’t necessarily care about me. That makes for an altogether more honest response and people don’t always agree with me. I don’t mind. That’s the job. But, in this case, someone responded who I felt was particularly callous towards May’s health. The comment begins (and I’ve shortened it for this post): 1.) You’ve traveled a lot and had several terrible interactions with the airlines, yet you totally relied on someone on the phone when they said that storing your daughter’s life saving medication wouldn’t be a problem. And you believed them? If I HAD to travel with life saving medication and it HAD to be kept cooled, I would not have relied on some total stranger taking care of that for me. Nope. 2.) Your could not prove your car seat was FAA approved, but you wanted to use it anyway. If I, an American without a special needs child, purchased a car seat at a second hand shop and I couldn’t prove it was FAA approved, should I be allowed to use it? On what basis are you expecting this busy person who doesn’t know you or your situation, to allow you to use a non-approved car seat. Sure, if you look at the seat maker’s website, it looks as if it fits the requirements, but the attendant has no way to know that. I smpathize with the challenges of traveling with a child in general, on top of the additional challenges May faces. Sadly, I don’t think it’s reasonable of you to ask that specific rules be ignored for her beneift. While it’s true that the rules have not been consistantly enforced, they are still the rules. Is there a lesson to learn from our experiences – as this person implies – that we should trust no one, depend on no one, other than ourselves? I wish I could say theirs is a lone voice. But, many people feel a kind of zealousness, that they must set the world aright over issues like the disabled demanding and receiving special treatment. They don’t understand that treating May “equally” is not equal; in this case, it put her in harm’s way. People like this lack perspective; they place more value on the time of a “busy” worker than the safety of a disabled child. Really, it is not the regulation, but the people on the day who decide whether May’s safety will be paramount or not. And,...

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5 things my half-brained baby taught me on vacation (pics!)

Posted on Aug 23, 2012 | 4 comments

5 things my half-brained baby taught me on vacation (pics!)

America, you are big. Your roads are long and your availability of public transportation is small. You have many malls, too many to visit. You tempt me with your burgers. Damn those burgers! All this I knew before; visiting family in the States brings it all home (literally). But, even I have more to learn. And, May is ready to teach me. Okay, she is no longer a half-brained baby – maybe, at three-years old, we can call her a half-brained beauty. Here are 5 things my half-brained beauty has taught me: Your half-brained beauty will have more fun than you think. Lots of fun. The challenge of new surroundings is not necessarily a bad thing, despite tears. You will discover new things your half-brained beauty enjoys. When in doubt, there is always ice cream. You always need more diapers, drinks and food than you think. A lot more diapers, drinks and food. Here are some photos of May’s American summer. Enjoy! For more of my travels to America this summer read: Of all the stupid things I’ve done, this is the dumbest. The result of the stupidest thing I’ve ever...

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The result of the stupidest thing I’ve ever done

Posted on Aug 15, 2012 | 8 comments

The result of the stupidest thing I’ve ever done

So, last week, I did something really dumb. So stupid it left me stranded at Heathrow Airport, in the middle of the Olympics with two children under-4 screaming for food. There is no pacifier in the world big enough to stop up that situation. I had just laid the disabled daughter card on the desk of the ticket agent for Delta. The ticket agent didn’t look moved. Not by that, or the tears I struggled to hold back. I knew what missing that flight meant. It meant I wasn’t going home to see my family. My family who I hadn’t seen in seven months. Turns out there are worse things than traveling on a long-haul flight with a disabled toddler and a one-year old. There is not traveling at all. The ticket agent excused himself to speak with his supervisor. He left me for almost a half-hour. When he returned, I was convinced I wasn’t getting on any plane, ever. But, instead he said, “My supervisor has prioritized you.” I gasped. “What does that mean?” “That means you will be traveling on next flight.” It meant more than that. Originally, Delta had put us in their bulkhead row at no extra cost. We shouldn’t have to pay, but airlines usually argue with me about it because people pay good money for those seats. Delta put us on the flight and gave us their Extra Comfort seats. Not bulkhead, but still more room and bigger seats. I broke down in tears. May also broke down in tears. She screamed non-stop (no exaggeration) for the next two hours. It was unbearable and made all the worse by Heathrow security who insisted I eat from four baby food pouches and even May’s medically prescribed formula. This has never happened before. “It’s prescribed from a doctor,” I told her, while I held a hysterical May. “I can’t open it because I can’t risk it spoiling. I need every bottle of it to last.” “You drink it, or it stays here,” she said, sharply. I stood in front of her, with an airport disabled escort for May next to me and the prescription from my doctor in my hand. I drank the milk and I ate the baby food and I told her how idiotic it was. She took her break immediately following meeting me. The flight was the worst I’ve had yet. Two children under-4, one disabled and one who wants to crawl, does not make for an easy flight. But, I didn’t care. Perspective. That’s what my stupid mistake brought me. Didn’t read Part One? Click here: Of all the stupid things I’ve done, this is the...

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Of all the stupid things I’ve done, this was the dumbest.

Posted on Aug 11, 2012 | 10 comments

Of all the stupid things I’ve done, this was the dumbest.

Last Tuesday, my husband and I packed up our kids, two pieces of luggage, two carry-on’s, May’s standing frame and a double stroller into our Ford Mondeo Estate (yes, it all fit) and drove with the children from Wales to London Heathrow. It was a three-hour drive and only the start of my travels home to Michigan. The day started at 5.40 AM. It didn’t end until after midnight. Well after midnight. Actually, considering that the children left in the morning with no breakfast and we woke them early, the day started smoothly. The kids complained a bit and then fell back asleep. Everything was fine. Until we arrived at the airport. It was then that I discovered I’d looked at my confirmation email wrong. I had read my arrival time as my departure time. We missed our flight. Three reasons why this was the dumbest mistake ever: It is the middle of the Olympics. Heathrow is the official airport of the Olympics. Remember how I didn’t give the kids breakfast? I’m not made of money. I headed towards the ticket desk. I wasn’t hopeful they would reassign our tickets for a later flight. Maybe they would let me buy completely new tickets, at make-me-bankrupt prices. My husband waited at the side while our two, very hungry, children politely demanded food at the top of their lungs. Meanwhile, I stood in line behind an American teenage boy who thumbed absentmindedly through a wad of $100 bills. “How much do you have left?” asked his friend. “About three thousand,” he said. “My mom didn’t know how much Olympic tickets would cost so she gave me loads.” Now, I’m not made of money, so my instinct was to punch this chubby, 15-year in the throat and grab the cash. Surely, some intrepid person would shortly relieve him of it anyway? Finally, after he booked his upgrade, I approached the ticket desk. “All the flights are full,” the attendant said. Click-click-click on the computer. “Yes, all full.” Click-click-click. “You will have to pay a transfer fee.” “I’ll pay anything,” said me, the person made of money. “And then, you will have to wait stand-by,” he continued. “What’s that mean?” I said. “Stand-by for how long?” “I can’t say.” I took a deep breath in preparation for some professional pleading. “I’m not trying to be awkward. I don’t mind paying the transfer fee. But, my daughter is severely disabled and if you are asking us to wait days, sitting by the gate, we just can’t do that. She has equipment. She needs special food. Medicine. I’m sorry, we can’t do that.” Should I have used the “disabled child” card? And, do you think it worked? Answer in the next...

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