A recent article in the Miami Herald brought up some questions. If you are a disabled parent, do you receive the same respect and support as parents without a disability, and if not, how prevalent is the inequality?

The story was about a mother who suffered a back injury that created a significant amount of pain, preventing her from working and leading her doctor to recommend narcotic pain pills. Because of her dependence on the medication, the court ordered her to complete a variety of parenting tasks which she failed due to a lack of financial resources. Her child was then taken away and given to the grandparents.

This situation had a few variables involved that have no relation to a disability, but it inspired us to do some research. It turns out that there are quite a few Internet and print resources that are aimed specifically at the disabled parent. Some are for women only and others offer support to both sexes. After reading just a handful of sources, it became apparent that there are indeed issues faced by disabled parents that need attention.

“Many doctors may have difficulty dealing with women who are both pregnant and disabled. We blur their categories,” says says the DisAbled Woman’s Network (DAWN), “Physicians lack models for dealing with us. Many have a hard time saying, “I don’t know how to deal with this, but I’ll try to find out as much as I can and help you as best I can.” Rather than deal with us honestly, they may urge us to abort, or be unsympathetic.”

Added to negative physician attitudes about disabled parenting are complications that arise from pregnancy that are specific to each disability. Spinal cord injuries (SCI) are already prone to cause urinary tract infections (UTI) and with the addition of a pregnancy and the strain it places on the bladder, the potential significantly increases.

DAWN also points out that there are also issues with medical equipment not being safe or properly designed for gynecology exams on those who are wheelchair dependent or who have little or no use of their limbs. In a poll that resulted in 245 respondents, DAWN found that the disabled mothers who had children experienced the following problems: 25% had housing issues, 25% had difficulty transporting their children, 33% had trouble with child care, 32% had a problem with household tasks and 33% found that social/medical workers didn’t understand their situation.

The Family-Friendly-Fun Website has something similar to say, “For too long, people with disabilities had been told that having families of our own was not an option. The truth is, though, that we have always been parents, and as our society evolves, more and more of us will have access to that opportunity.” They go on to add that “Being disabled parents in the twenty-first century is slowly starting to improve but unfortunately disabled parents are still sometimes met with discriminatory attitudes both by professional organizations, and by the family and friends of the disabled parents themselves.”

Adaptive equipment is out there, but it’s rare and considering how individual-specific each situation is, coming up with a “one size fits all” option for those with disabilities is out of the question. Certain things need to be taken into account that the typical stores seldom provide - accessible changing stations and bathing equipment, cribs and beds, harnesses to allow quadriplegics to hold their child and so on.

Luckily there are organizations that are working to not only support parents with disabilities, but also to draw attention the the unique challenges they face and how our communities can better assist them. Here are some resources to get you started:

Parents with Disabilities Online (Includes some adaptive equipment.)

Disability, Pregnancy & Parenthood (Has an online or print journal with stories of disabled parents and how they are coping.)

Disability in Pregnancy and Childbirth (A book that is highly recommended on a variety of Websites.)

The Federal Motor Vehicle Safety Standard (FMVSS) 207 “specifies strength requirements for automotive seats and their attachment assemblies, so as to minimize the possibility of their failure by forces acting on them as a result of vehicle impact.”

While this standard helps to regulate how well a seat structure performs in an accident, it has failed to significantly decrease injuries and fatalities due to seatback failure. Alyssa’s story is one of many such devastating tales.

The Insurance Institute for Highway Safety lists 2006 as their most recent year of fatality statistics. There were 1,327 deaths caused by rear impact motor vehicle accidents. The majority of fatalities were under the age of 25, with crashes causing one of every three injury-related deaths among children under 13.

Of these numbers, it is unclear exactly how many death were a result of seatback failures, but what is clear is that auto crashes are a significant cause of life ending or altering injuries in children. What is tragic is the lack of governmental oversight, or seemingly interest, in how often seats fail with catastrophic results.

We have numerous reports on air bag related injuries, but no hard data on seat failures and the resulting injuries. A study for The Los Angeles Times by Keith Friedman, an auto safety researcher, analyzed 72 rear-end collisions using a government database of tow-away crashes, found that from 1988 to 1997 1,800 backseat passengers were injured or killed by seat failures.

What we need are more researchers willing to invest the time into this important subject. Data on which cars have a history of seat collapse and which ones are best known to withstand a rear impact needs to be better available to the public. This topic isn’t a new one - auto safety engineers have been issuing warnings on this subject since the 1950s.

The FMVSS 207 was adopted back in 1968 and other than adding vans, trucks and buses in 1972, there hasn’t been an update in its standards since. FMVSS 207 requires that a seat back be capable of handling an impact of 270 foot/lbs. Now compare that number to the 6,000 lbs. of force that seat belts are required to withstand before failure. Why would the seat only need to be four or five percent as strong as the seat belt?

The National Highway Traffic Safety Administration (NHTSA) is well aware of the problem and in 1996 actually admitted that the current standard was inadequate…this didn’t lead to any changes, only further recognition of the problem in 1997 and 1998. One of the reasons they are dragging their heels is over the concern that stiffer seatbacks will lead to more incidents of whiplash.

Compare a whiplash injury with a traumatic brain injury (TBI) that leads to permanent disability or death - which one would you chose?

For now, research into the car you own or are looking to buy is the best offensive you can take to keep you and your passengers safe. One Website with some information, though not nearly enough regarding seat failures, is Safecar.gov. Until we see higher seatback safety standards, we will continue to hear of tragic stories such as Alyssa’s. We need to write to NHTSA, to our local government and to our automobile manufacturers. These issues need to be resolved for the safety of all vehicle occupants.

An unusual path to brain damage:

In the news these last few days have been versions of a story about a woman who suffered brain damage from a detox diet she was on. The British woman, Dawn Page, was taking a nutritionist’s advice and ingesting large amounts of water while cutting back on salt intake.

The resulting sodium deficiency caused an epileptic fit that lead to permanent brain damage. Page was given a settlement by the nutritionist’s insurance company, but that didn’t exactly make up for the memory damage, speech difficulties and loss of concentration that Page now lives with.

This story is a good example of how important it is to make sure you are taking advice from a registered and thoroughly trained professional. Not only that, but following up someone’s advice with research of your own to make sure that there is some validity to the information is equally important.

It’s easy for people to assume that because someone lables themselves a nutritionist or doctor or herbalist, etc., that they are automatically trustworthy. In our culture we tend to take “professionals” on faith, figuring that they wouldn’t lie to us as they are in the health profession.

One thing to remember is that sometimes they aren’t lying, such as seemed to be the case with Page’s nutritionist, Barbara Nash. From all accounts, Nash believed what she was selling and most likely it was ignorance on her part that caused her to prescribe a detox program that was so dangerous. This is why doing your own research to back up what you have been told is so important.

On the blog, If I Only Had a Brain, author Laura Bruno discusses how to improve your cash flow when you are encumbered with a disability. She lists tips for those who were injured at work or in a car accident while providing ideas for additional earning potential. While not overly in-depth, the information she provides is a good starting place for determining how you will continue to generate income after a disabling injury.

A TBI survivor herself, Laura has turned her situation around by becoming a Life Coach and the author of If I Only Had a Brain Injury: A TBI Survivor and Life Coach’s Guide to Chronic Fatigue, Concussion, Lyme Disease, Migraine or Other “Medical Mystery”.

With so many adaptations to make after a brain or spinal cord injury, resources such as hers can help provide you with information that will make your “new” life easier and fuller .

What would happen if you were declared brain-dead after only four hours under doctor supervision, only - your brain was still ticking? Lori Ross knows just what it is like to be mis-diagnosed and not just due to lack of fore site but because of a lack of knowledge on the doctor’s part.

Ross suffered from polio and was taken to the hospital when she stopped breathing. Shortly thereafter she was declared brain dead. Luckily her parents refused to accept that diagnosis and she is now recovered and doing well. Because of what happened to her, she is trying to spread awareness about how doctors “underestimate the quality of life of people with disabilities.”

Story thanks to the Winnipeg Free Press.

Image from here.

The blog Traumatic Brain Injury is engaging… the woman who writes it shares her experience living with TBI and how it has affected her life. Her most recent post, on the “silent epidemic”, discusses the fact that so many TBI people are not seen… their injuries being internal, without the scars to show the world what happened to them.

Her story is worth sharing.

In the blog “How to Recover: Comebacks from Traumatic Brain Injury”, Mike Wilkinson has posted a series of posts discussing TBI recovery plateaus. The information on Wilkinson’s site is both helpful and well worth considering if you or someone you know has suffered a traumatic brain injury.

Wilkinson talks through the both the frustrations and thoughts he experienced when it seemed like his recovery had stalled and at points, actually seemed to reverse. He brings up the potential for using a plateau as an excuse to stop trying to hard and shares how he dealt with his own situation.

For the whole post, click here.

Image credit here.

Chris Dufficy, Jon Gocer, Christ Tutin - do you recognize any of these names? Dufficy is a pro-snowboarder, Gocer a popular skateboarder and Tutin is a dirt bike rider, and all of them have sustained traumatic brain injuries while participating in extreme sports.

Profiled in Lionel Goddard’s documentary film Wipe Out, these young men represent a growing percentage of youth who are pushing their physical limits with ever faster and increasingly maneuverable high-tech gadgets.

According to a Center for Disease Control and Prevention study, close to 213,000 people were treated in U.S. emergency departments from 2004 to 2005 due to recreational outdoor activities. More than 50% of those injured were aged 10-24 and close to 24% of those injuries were to the head and neck. A total of 6.5% were diagnosed as traumatic brain injury.

While not all of the injured failed to wear protective gear, a significant amount can link the lack of a helmet with concussions and brain injuries. A decrease in snowboarders or skateboarders is unlikely, but the proper education of those participating in potentially dangerous activities will help to slow down the incidents and resulting damage.

Click here for some CDC TBI statistics.

Image credit here.

A 28-year-old woman died of severe brain damage after an accident incurred while snowboarding in Colorado. The odd thing is, her accident didn’t cause any trauma directly to her head or brain. Jennifer Ash, of Indianapolis, IN, fell and landed hard on her buttocks while snowboarding on March 16. Ski patrol was not notified because the accident was assumed to be fairly minor.

Her friends did take her to a medical center where she was evaluated and sent to critical care at another facility. It was soon discovered that Ash had suffered a vertebral artery dissection which resulted in a basilar artery stroke brain damage. She was pronounced dead on March 23, seven days after her accident.

Vertebral artery dissection is caused by a whipping action of the neck which hyper-extends side to side. Blood flow is significantly reduced, leading to damage of the oxygen-starved portions of the brain.

So if there are any snowboarders or other extreme athletes out there, be careful! And, more importantly, know the risks of your sport and of this specific type of injury. If you tweak your neck, be sure to get medical treatment immediately just to be on the safe side. Read the original story here.

Have you experienced or heard about similar rare or freak accidents? If so, leave a comment. I’d like to hear about it.

Following right on the heels of yesterday’s story about the spinal cord injury patient in southern Oregon, is this story of SCI patients in the UK. Apparently they too are finding the Nintendo Wii to be a beneficial part of SCI recovery. Sounds like fun too!