best infant toys for car trips image
Carla B
By Lindsey Tanner, Associated Press
CHICAGO — In a case fraught with ethical questions, the parents of a severely mentally and physically disabled child have stunted her growth to keep their little "pillow angel" a manageable and more portable size.
ON DEADLINE: Debate the case, read family's blog
The bedridden 9-year-old girl had her uterus and breast tissue removed at a Seattle hospital and received large doses of hormones to halt her growth. She is now 4-foot-5; her parents say she would otherwise probably reach a normal 5-foot-6.
The case has captured attention nationwide and abroad via the Internet, with some decrying the parents' actions as perverse and akin to eugenics. Some ethicists question the parents' claim that the drastic treatment will benefit their daughter and allow them to continue caring for her at home.
University of Pennsylvania ethicist Art Caplan said the case is troubling and reflects "slippery slope" thinking among parents who believe "the way to deal with my kid with permanent behavioral problems is to put them into permanent childhood."
Right or wrong, the couple's decision highlights a dilemma thousands of parents face in struggling to care for severely disabled children as they grow up.
"This particular treatment, even if it's OK in this situation, and I think it probably is, is not a widespread solution and ignores the large social issues about caring for people with disabilities," Joel Frader, a doctor and medical ethicist at Chicago's Children's Memorial Hospital, said Thursday. "As a society, we do a pretty rotten job of helping caregivers provide what's necessary for these patients."
The case involves a girl identified only as Ashley on a blog her parents created after her doctors wrote about her treatment in October's Archives of Pediatrics & Adolescent Medicine. The journal did not disclose the parents' names or where they live; the couple do not identify themselves on their blog, either.
Shortly after birth, Ashley had feeding problems and showed severe developmental delays. Her doctors diagnosed static encephalopathy, which means severe brain damage. They do not know what caused it.
Her condition has left her in an infant state, unable to sit up, roll over, hold a toy or walk or talk. Her parents say she will never get better. She is alert, startles easily, and smiles, but does not maintain eye contact, according to her parents, who call the brown-haired little girl their "pillow angel."
She goes to school for disabled children, but her parents care for her at home and say they have been unable to find suitable outside help.
An editorial in the medical journal called "the Ashley treatment" ill-advised and questioned whether it will even work. But her parents say it has succeeded so far.
She had surgery in July 2004 and recently completed the hormone treatment. She weighs about 65 pounds, and is about 13 inches shorter and 50 pounds lighter than she would be as an adult, according to her parents' blog.
"Ashley's smaller and lighter size makes it more possible to include her in the typical family life and activities that provide her with needed comfort, closeness, security and love: meal time, car trips, touch, snuggles, etc.," her parents wrote.
Also, Ashley's parents say keeping her small will reduce the risk of bedsores and other conditions that can afflict bedridden patients. In addition, they say preventing her from going through puberty means she won't experience the discomfort of periods or grow breasts that might develop breast cancer, which runs in the family.
"Even though caring for Ashley involves hard and continual work, she is a blessing and not a burden," her parents say. Still, they write, "Unless you are living the experience ... you have no clue what it is like to be the bedridden child or their caregivers."
Caplan questioned how preventing normal growth could benefit the patient. Treatment that is not for a patient's direct benefit "only seems wrong to me," the ethicist said.
Douglas Diekema, a doctor and ethicist at Children's Hospital and Regional Medical Center in Seattle, where Ashley was treated, said he met with the parents and became convinced they were motivated by love and the girl's best interests.
Diekema said he was mainly concerned with making sure the little girl would actually benefit and not suffer any harm from the treatment. She did not, and is doing well, he said.
"The more her parents can be touching her and caring for her ... and involving her in family activities, the better for her," he said. "The parents' argument was, 'If she's smaller and lighter, we will be able to do that for a longer period of time.'"
Copyright 2007 The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.
Answer
Personally, I think that the parents reasoning is a slippery slope. I know how difficult these decisions are from a personal perspective. But I think such treatment may be against the person's best interests and would not ensure the outcome the parents envisioned. Despite their having the best intentions, I would not advocate this treatment mostly for fear of unforeseen repercussions to the person and fear that it would not accomplish the goal I sought.
Personally, I think that the parents reasoning is a slippery slope. I know how difficult these decisions are from a personal perspective. But I think such treatment may be against the person's best interests and would not ensure the outcome the parents envisioned. Despite their having the best intentions, I would not advocate this treatment mostly for fear of unforeseen repercussions to the person and fear that it would not accomplish the goal I sought.
What kind of toys worked when flying with kids(less than a year old) on long flights ?
I have a 10 month old, will be flying to Asia, I have purchased a seat for her but she does not enjoy being strapped in the car seat for long. I am contemplating checking in the car seat, at the same time wondering if the airlines provides you with necessary things to secure a child this young ? My first time flying with her so want to do every bit of research so make the journey comfortable for her and other fellow passengers. Please feel free to pass on any tips as well. Thanks.
Answer
We’ve only flown with a really young child once, and it wasn’t as long of a flight as you’ll be taking. My son was 13 months old, so a little older than your baby.
We checked the car seat and did not bring it on the plane. We’d flown with our daughter once when she was a toddler and used the car seat on the plane. It was awful--the seats are so close together that she literally had nowhere to put her feet. The man sitting in front of her insisted on reclining his seat, which made it worse. If she bumped his seat (which she could not help doing every time she moved), he turned around and glared at us. He even made a few comments about it, and when I tried to explain that it wasn’t the poor kid’s fault, he got very huffy. We decided to never try to bring a car seat on the plane again. I don’t know why the airlines suggest it, when they don’t even fit onto those stupid seats!
To keep my son occupied--we brought along a few quiet toys, some small books, and LOTS of snacks. It’s not a tactic I normally use, but to keep him happy on the plane I pulled out something new each time he got restless. His favorite activity was searching for Cheerios in a small box. I’d put a few Cheerios at a time into the little box, and he’d dig around for them. We also brought some of those Crayola Color Wonder markers and paper. The markers only write on the paper, so don’t make a mess. Your baby might be a bit young for something like that, but if she is starting to enjoy scribbling on paper, the markers might keep her busy for a while.
I’d suggest getting some small, inexpensive, quiet toys that your daughter has never seen before. They will be new to her and more interesting than her own toys. Pull them out one at a time, as needed, whenever she gets restless. She’ll probably also like playing with your keys or your cell phone--my kids always liked those things more than they liked their toys! Bring along some picture books that are new to her as well. The novelty of everything will keep her occupied for longer.
Also, it’s a good idea to have something on hand for your child to drink during take-off and landing so her ears don’t hurt. I don’t know what the current regulations are for bring things like juice boxes or bottles onto an airplane, but make sure you check that on the airline’s website before you leave.
Here are some websites with more tips for traveling with children:
http://www. flyingwithkids .com/ best_travel_tips .htm
http://www. flyingwithkids .com/ travel_tips .htm
http:// parenting.ivillage .com/mom/travel/0,,45jl, 00 .html
http://www. faa .gov/passengers/fly_children/
http://www. onestepahead .com/custserv/ shop_smarter_article .jsp?pageName=Flying_Tips
This article lists restricted items on planes. It does say that formula, milk, and juice for infants and toddlers ARE allowed. http://www. tsa .gov/travelers/airtravel/prohibited/ permitted-prohibited-items .shtm
Have a safe and happy trip!
ps you might want to pack some Advil or Tylenol for yourself. :)
We’ve only flown with a really young child once, and it wasn’t as long of a flight as you’ll be taking. My son was 13 months old, so a little older than your baby.
We checked the car seat and did not bring it on the plane. We’d flown with our daughter once when she was a toddler and used the car seat on the plane. It was awful--the seats are so close together that she literally had nowhere to put her feet. The man sitting in front of her insisted on reclining his seat, which made it worse. If she bumped his seat (which she could not help doing every time she moved), he turned around and glared at us. He even made a few comments about it, and when I tried to explain that it wasn’t the poor kid’s fault, he got very huffy. We decided to never try to bring a car seat on the plane again. I don’t know why the airlines suggest it, when they don’t even fit onto those stupid seats!
To keep my son occupied--we brought along a few quiet toys, some small books, and LOTS of snacks. It’s not a tactic I normally use, but to keep him happy on the plane I pulled out something new each time he got restless. His favorite activity was searching for Cheerios in a small box. I’d put a few Cheerios at a time into the little box, and he’d dig around for them. We also brought some of those Crayola Color Wonder markers and paper. The markers only write on the paper, so don’t make a mess. Your baby might be a bit young for something like that, but if she is starting to enjoy scribbling on paper, the markers might keep her busy for a while.
I’d suggest getting some small, inexpensive, quiet toys that your daughter has never seen before. They will be new to her and more interesting than her own toys. Pull them out one at a time, as needed, whenever she gets restless. She’ll probably also like playing with your keys or your cell phone--my kids always liked those things more than they liked their toys! Bring along some picture books that are new to her as well. The novelty of everything will keep her occupied for longer.
Also, it’s a good idea to have something on hand for your child to drink during take-off and landing so her ears don’t hurt. I don’t know what the current regulations are for bring things like juice boxes or bottles onto an airplane, but make sure you check that on the airline’s website before you leave.
Here are some websites with more tips for traveling with children:
http://www. flyingwithkids .com/ best_travel_tips .htm
http://www. flyingwithkids .com/ travel_tips .htm
http:// parenting.ivillage .com/mom/travel/0,,45jl, 00 .html
http://www. faa .gov/passengers/fly_children/
http://www. onestepahead .com/custserv/ shop_smarter_article .jsp?pageName=Flying_Tips
This article lists restricted items on planes. It does say that formula, milk, and juice for infants and toddlers ARE allowed. http://www. tsa .gov/travelers/airtravel/prohibited/ permitted-prohibited-items .shtm
Have a safe and happy trip!
ps you might want to pack some Advil or Tylenol for yourself. :)
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