Stacie Lewis’ experience raising hell…
... erm, raising a little girl with severe brain damage. The blog began in 2009 when May was 4 1/2 months old.
Currently, May enjoys bouncing and the dulcet tones of dub step.
Click on May's photo here to link to her best bits, including videos!
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May in the news!
- March 19, 2011 // 56 Comments
- June 21, 2013 // 45 Comments
- November 25, 2011 // 37 Comments
- November 14, 2009 // 36 Comments
- July 18, 2012 // 28 Comments
- November 6, 2012 // 27 Comments
- April 22, 2014 // 0 Comments
- April 18, 2014 // 4 Comments
- April 16, 2014 // 3 Comments
- April 15, 2014 // 3 Comments
- April 7, 2014 // 5 Comments
- By Mama Lewis, April 22, 2014
- By Ellen S., April 21, 2014
- By Mama Lewis, April 19, 2014
- By Scott, April 19, 2014
- By Mama Lewis, April 17, 2014
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Posts about May on BabyCenter!
A bit of praise but is it art? CP Info Dealing with Doctors Fun with May Giveaway Hip surgery Hot Air Ieuan Kids all access... London Leukemia Life with a CP Baby Lycra (Supergirl) Suit May vs The Hospital May's History Medical Records Music Not special needs. More like NEED IT. Nursery Physio Potty Training Preschool Seizures Sleep So-called experts Success! This week I'm... Transportation Visual Impairment
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, that unpredictability is frightening.
I didn’t respond. Should I have? And, what should I have said?
Photo: Flickr (nathanmac87)