Tuesday, August 28, 2012

Autism linked to Immune Disorders

In an opinion piece in The New York Times, 8/25/12, called "An Immune Disorder at the Root of Autism", the author Moises Beasquez-Manoff  discusses research that shows that perhaps one-third of cases of autism are caused by immune dysregulation related to the mother's response to inflammation during pregnancy. Results of a study in Denmark, for instance, indicate that viral infections in the mother during pregnancy increases the chances of having an autistic child by 30% and bacterial infections by 40%.

Infection is unlikely to have caused the increased incidence in cases of autism directly, because we are "more infection free than any other time in history". Instead, the increase parallels other epidemics like asthma and other autoimmune diseases. Autism seems linked to the autoimmune diseases of the mother:

"…One large Danish study, which included nearly 700,000 births over a decade, found that a mother’s rheumatoid arthritis, a degenerative disease of the joints, elevated a child’s risk of autism by 80 percent. Her celiac disease, an inflammatory disease prompted by proteins in wheat and other grains, increased it 350 percent. Genetic studies tell a similar tale. Gene variants associated with autoimmune disease — genes of the immune system — also increase the risk of autism, especially when they occur in the mother."

Theories to explain the increase in autoimmune diseases include the hygiene hypothesis — that we suffer from "microbial deprivation" and that in cultures with more exposure to microbes and parasites there are fewer autoimmune diseases. Animal studies also support some of the theories proposed in this article.

These studies provide a "therapeutic target" for treatment of autism and further research.

Monday, August 27, 2012

The House of Gort: a glimpse into the life of a Michigan family caring for two severely disabled daughters

The House of Gort from Steve Tatzmann on Vimeo.

"The House of Gort" is an exceptionally well-done documentary giving a glimpse into the life of the Gort family. Gwen, the first daughter of Tim and Gina Gort, was born with cerebral palsy. The second, the adorable Violet, has no disabilities. The third daughter, Eliza, was born healthy but suffered a cardiac arrest due to a medical error in the hospital. She has severe cerebral palsy as a result of the brain damage she suffered. [Gwen and Eliza are no less adorable than Violet, but they get starring roles in the video. Violet will have to settle for "best supporting actress" with extra accolades for being adorable.]

The video documents the constant care that the Gorts give their daughters and the consequences of medical errors. Their story was covered in the Grand Rapids News on 8/12/12 in an article by Sue Thoms - Parents sue DeVos Children's Hospital over newborn daughter's brain damage: 'They know they are wrong'.  It was also covered in a Grand Rapids TV news story on 8/12/12.

The Gort's have a blog where you can follow their story.

Wednesday, August 22, 2012

Abuse and sexual assault of people with DD

This is from the the VOR Weekly News Update for August 17, 2012.  It is about the rape of a developmentally disabled man who lived in a group home in New Mexico.  These are excerpts from an article in the Albuquerque Journal that appeared on February 23, 2010.

Larry Selk, who cannot speak or perform daily functions on his own, was raped in 2004 while living in College House, a group home operated by a ResCare's subsidiary in Roswell, New Mexico. The likely perpetrator was a group home employee who had been hastily hired after much of the College House staff was fired for using drugs and there was an urgent need for replacement staff. The man was hired with virtually no background check, which could have discovered problems in his past, and put on the job essentially untrained, according to trial evidence.  

A lawsuit was brought on Selk's behalf by his sister and legal guardian, Rani Rubio, resulted in a jury award of $48 million in punitive damages. Res-Care appealed, resulting in the judge slicing away a significant chunk of a jury's historically high punitive damages award. The punitive damages award was reduced from $48 million to $9.6 million in an order that also denied the company, ResCare Inc., a new trial.  

Second Judicial District Judge Nan Nash found that the punitive damage award was "unreasonable." "While (ResCare's) conduct was reckless, it was not intentional or malicious," Nash wrote in an order filed Friday. Nash left intact the compensatory damages — nearly $1.5 million against ResCare New Mexico and $3.2 million against ResCare Inc.

The ARC of New Mexico filed an Amicus brief in support of punitive awards for abusive providers. (An Amicus brief is a statement submitted by an individual or organization who is not a party to a lawsuit but has been permitted by the court to weigh-in on legal matters related to the case.) Unfortunately, the punitive damages awarded to the disabled man in this case were reduced, but the brief is nevertheless a valuable resource for anyone looking for information on this topic. It is a compendium of sources on abuse, especially sexual assault, on people with disabilities, showing how vulnerable adults are targeted by sexual predators, how crimes against them are under reported and often never reported to law enforcement, and how short staffing and frequent staff turnover in group homes increases the risk of abuse.

These are excerpts from the Amicus Brief:

  • p 2: The lives of those with developmental disabilities cannot be improved... unless their lives are first made safe. Unfortunately, the deck is stacked against those with disabilities. Sexual predators see people with disabilities as powerless and vulnerable. Consequently, people with disabilities suffer abuse and rape at much higher rates than the general population.
  • p 2: For large-scale providers such as RCI, only substantial punitive damages awards can force them to improve the quality of care they provide to Mr. Selk and others-and thus deter similar injuries in the future.
  • p 11: Researchers recognize that high turnover among the staff increases the risk of sexual assault...When service providers fail to provide adequate staff and supervision, it also increases the risk of sexual violence.
  • p 12: If a provider is on notice of but fails to correct systemic problems, this demonstrates a fundamental lack of respect for the rights of its residents.
  • p14: While the estimates of sexual abuse of developmentally disabled people are staggering, it may only be the tip of the iceberg. As one New Mexico survey found, "[r]ape is significantly under-reported to law enforcement…"
  • p 15: … the problem is probably bigger than suspected, the victims even more numerous. And yet, in part because the crimes are not reported, offenders go unpunished, free to commit more crimes-while service providers entrusted with the individuals' care and safety know little risk exists of being held accountable even though their own failures provided opportunity for the crime.
  • p 15: Even when victims or their loved ones report sexual assault, the perpetrator usually is not punished.
  • p 15 - 16: When society's response to sexual assault is devoid of serious penalties, it increases the perception that people with developmental disabilities are unequal in the eyes of the law.
  • p 16: Civil lawsuits against service providers who injure their residents, rather than care for them, play a crucial role in ensuring equal rights and the safety of individuals with disabilities. If we can encourage these providers to fulfill their duty to their residents--or at least deter them from breaching that duty-sexual violence against vulnerable individuals will be reduced.

Tuesday, August 14, 2012

Unusual sightings in Michigan's northwestern lower peninsula

Sunset on Walloon Lake

This is what you get when you put out your bird feeders. I have learned that there are more than four kinds of squirrels in Michigan: the woodchuck or groundhog its the largest in the squirrel family, but they don't bother the bird feeders. Next largest is the fox squirrel. The chipmunk and the 13-lined ground squirrel are the smallest. The grey squirrel is smaller than a fox squirrel and is sometimes black. The red squirrel is a bit larger than a chipmunk - one of these has been stuffing his cheeks with sunflower seeds and then running into the neighbors yard to store them in a hole in the ground. There is also a small flying squirrel but it is rarely seen because it is nocturnal.

Wild Turkeys: 

We have seen many wild turkeys on the Wildwood Harbor Road between Walloon Lake and Boyne City. The most impressive sighting was a flock of about twenty with four adults and sixteen juveniles. They were crossing the road to get to the other side.

Turkeys on Bicycles: 
  • The hills here are the remains of ancient sand dunes that are thrilling to bicycle down but an arduous climb up. I went for a bike ride by myself this morning, taking my driver's license and my cell phone, so that whoever finds the body can identify me and call 911. As I am coasting downhill I begin thinking it wouldn't be so bad if I added just a few more miles to my outing. On the up hill stretches, I wonder why I ever left home. 
  • Last week, we passed a foolish young man on a bicycle who was coming down as we were bicycling up. He wore no helmet and he was bicycling no-hands as he was listening to his iPod and texting. Kids these days!
Sailing on Walloon:

 Lake Michigan at Charlevoix:

Me in a Kayak:

             [No Photo]

Monday, August 6, 2012

Indian Trails Camp near Grand Rapids

Here is a note about a new camping opportunity for families in Michigan. Indian Trails Camp, six miles west of Grand Rapids, Michigan, is a camp for people with disabilities that will have its first Family Camp at the end of September. This is from the website:

Family Fun for Everyone!

August 3rd, 2012

We are so excited to have our first Family Camp this fall from September 29-30!  This will be a wonderful opportunity for everyone in the family to enjoy the joys of camping together, no matter what their abilities are, while strengthening their bonds.  

Each family will have their own cabin for their entire stay and during the day get to choose from different programming options to make their visit as enjoyable as possible.  So whether it's indoor swimming, rock climbing, or creative arts - whatever is most fitting for your family's needs and wants.  And what's camping without ending the day by roasting marshmallows by the camp fire with your family and new friends.

Don't miss out on experiencing camp in an accessible environment where all family members can participate in adaptive activities!  If you are interested or have questions, please feel free to contact us at (616) 677.5251 or info@indiantrailscamp.org

I give up on hospital cafeteria food and Ian goes home

Ian update: After Ian smiled and smirked at the doctors Saturday morning as they were poking and prodding his belly, they decided he was well enough to go back to his group home. It took until 3 p.m. to complete the paperwork and pick up his antibiotics at the hospital pharmacy before we were completely free of the hospital. Try as I might, I was unable to eat $20 worth of hospital cafeteria food awarded in the form of coupons as compensation for the long wait in the emergency room. I bought Ian a couple of yogurts with fruit, so he did get to share in the bounty.

The next day, the Barkers left for a vacation in northern Michigan with the dog.  It remains to be seen if Grandpa (who is 101 1/2) and the Barker boys can stay out of the hospital for a couple of weeks.

Here is the beach on Lake Michigan in Charlevoix:

Friday, August 3, 2012

Update on Ian: out of the emergency room, into the hospital, and free food from the hospital cafeteria

Update on Ian: Ian ended up spending 1 1/2 days in the emergency room with forty other people waiting for beds in our world-famous hospital. By late Thursday afternoon, the word came down that a room was available and Ian was there by 8 p.m. He is recovering from his bladder infection and was fever free today. He is starting to smirk again at the nurses, so I have hopes that he will be able to go home tomorrow.

When we visited Ian this evening there was a letter on his bedside tray from the chief operating officer of the health system apologizing for the long wait for admission to the hospital. With it were four $5 coupons to pay for meals at the hospital. I'm sure this is part of the "It's OK to say you're sorry" policy that I have written about before. It does take the sting out of the long wait and frustration of dealing with a large health system. $20 worth of food from the hospital cafeteria is not exactly a dining adventure, but I intend to spend every penny of it, no matter what. 

And yet I still have lingering questions about a health system that is so flush with money that it can build new hospitals with beautiful art work and spacious interiors year after year but can't get people from the emergency room to a hospital bed in less than a day and a half.

Wednesday, August 1, 2012

The DD News Blog: Live blogging from the bowels of an emergency room!

My dear son Ian landed in the Emergency Department of a world-famous hospital and medical school today with seizures and a high fever. If you are contemplating a visit to your local ED (formerly known as the ER or Emergency Room), try having seizures. Other than profuse bleeding, it seems to be the surest way to be seen quickly by the ED staff.

It seems fairly certain that Ian has a urinary tract infection, but the specific culprit causing it will not be known until tomorrow or later. To make things interesting, a doctor, who is low in the pecking order, stopped by to practice some medicine this afternoon. He started prodding Ian's belly. Ian can't talk, but I could tell it really hurt by the faces that he was making.  So the doctor speculated that maybe he has appendicitis, a condition that can masquerade as a urinary tract infection. He thought further tests were in order, but when the attending physician came by to repeat the prodding, she wasn't so sure about the appendicitis. Ian did not look like he was in pain and, after all, we already had a pretty good explanation for all his symptoms.

To complicate matters, further tests were not officially ordered, but the doctor was not clear as to whether it was OK for Ian to eat and drink. He has had nothing to eat all day and he takes his seizure medication with food. I made a small stink about him not getting his seizure medication, seeing as how WE DON'T WANT HIM TO HAVE MORE SEIZURES!  Finally, the nurse got the medication and said it would be alright to give him small bites of yogurt with his pills. At this point, I took over and Ian began wolfing down the yogurt with his pills and I couldn't help myself - I gave him the whole carton of yogurt plus a glass of water to wash it down. He and I are both happier except that he would prefer more than a carton of yogurt for dinner.

To continue with this comedy of errors, I happened to read a document with Ian's name on it summarizing his hospitalizations and surgeries over the last decade or so. It said he had a cardiac surgery procedure in 2001 which is news to me. Don't you think they would have told his mother about this? It also mentioned NEC that I discovered means necrotizing enterocolitis, a serious gastrointestinal emergency occurring in newborns, another thing Ian never had. Ian has enough wrong with him that his medical history needs no embellishment. I have no idea where this stuff came from.

It reminds me of one of Ian's past hospitalizations in an intensive care unit when my confidence was shaken by a hospital technician who swooped into the room and asked if he (referring to Ian) went by the name of Richard or did he like to be called Dick? I said, he really prefers Ian. He swooped out of the room again looking for someone named Dick on whom he could perform a medical procedure.

We are now in a wing of the ED filled with people who will be admitted to the hospital when and if there are ever empty hospital beds. The long wait has begun with no end in sight as another shift of workers comes on the job chatting so loudly that the inmates are waking up again after finally settling down. Every five seconds a bell or alarm goes off and as far as I can tell there is no urgency to respond. It will be a long night ahead for Ian and I, but at least we can look forward to a laugh a minute.