Posts Tagged ‘special needs children’

Week in Review (May 8 – 13, 2011) The Eye Opener Health, Law and Medicine Blog

Saturday, May 14th, 2011

From Brian Nash (Editor)

It was another busy week of blogging at Nash & Associates.

The topics of the week were wide-ranging: special needs kids and man’s best friend; Ovarian Cancer – tips for getting the best care; school’s responsibility for informing parents when a child is in danger from themselves or others; stroke – particularly in the African-American community; and the role of social media in general and in our firm for getting the word out about wonderful charitable and civic organizations.

This past week also saw the posting our a new White Paper by Marian Hogan on a very real problem in many of our nation’s hospitals – patient controlled analgesia (PCA). Marian’s piece explores the risks and benefits of this great form of pain relief for hospital patients. Unfortunately, many of the practices in hospitals raise serious concerns about the level of monitoring of PCA in terms of patient safety.

See what strikes your fancy and then click the blog’s title, photo orread more” to view the entire article. Enjoy – and – as always – thanks for stopping by!

PCA Patient Controlled Analgesia: Is it Safe in Today’s Hospitals?

Author: Marian Hogan

Patients who undergo a surgical procedure in a hospital are often placed on intravenous pain medications after the procedure. These medications, such as morphine or other opioid narcotics, are frequently delivered by a pump mechanism that can be regulated by the patient. This is termed a PCA or patient controlled analgesia pump.

Studies have found that there are roughly one half million or more in-hospital cardiopulmonary arrests (IHCA) in the U.S. every year and that approximately 80% of those patients who suffer an in-house cardiopulmonary arrest do not survive, or sustain permanent and severe brain injury if they do live. Read more>>

 

Dogs a huge help for special needs kids

By:  Mike Sanders

Dogs and kids just seem to go together. Whether it’s running around the yard and roughhousing or just sitting quietly watching TV together on the sofa, dogs seem to gravitate toward kids. For some special needs kids, however, dogs are more than just a friend and play buddy; they are actually a daily caregiver.

The idea of service dogs for disabled children is a little-known yet burgeoning niche in the world of special needs. Everyone knows about service dogs for the blind. I have to admit that until recently, I had never even considered service dogs for other disabilities, let alone children. Then a friend of mine whose son is autistic mentioned that she was thinking about getting an autism service dog for her son. I was puzzled. Her son suffers from sensory processing disorder so I didn’t understand what a dog would be able to do for… read more>>


 

Ovarian Cancer

 

Ovarian Cancer – five tips to make sure you get the medical care you need

By Jon Stefanuca

Did you know that more than 21,000 women are diagnosed with ovarian cancer in the U.S. each year? An astonishing 15,000 women die from ovarian cancer each year. Despite numerous advances in healthcare, the mortality rate for ovarian cancer has not improved in the last 30 years. Simply put, ovarian cancer is the deadliest of all gynecologic cancers. If the cancer is diagnosed in its early stages (i.e. before it spreads to other organs), the five-year survival rate is . . . read more >>

 

School’s Duty to Parents: Is Your Child at Risk?

By: Sarah Keogh

Recently, I have been thinking quite a bit about schools. My son is going to start kindergarten in the fall and my daughter just started preschool last week. While both of my kids are still little, over the years children end up spending many of their waking hours each week at school. The school becomes as much a part of their lives as home for most kids. As parents, we put trust in the school that they will be keeping our children safe and healthy while we are not around to supervise. But do the schools recognize that trust and live up to it?

I was recently made aware of a situation involving a teenager who was having some health concerns. Her parents had first noticed that their daughter… read more >>

 

Brother, will you help me? If you don’t this stroke might kill me

By: Jason Penn

Mother’s Day is in the rearview mirror.  This past Mother’s Day someone told me a story about how their grandmother fell ill.  It was the holiday season, and as she climbed the ladder to decorate the tree, things took a tragic turn. She stumbled, lost her balance and fell.  She seemed “off.” A few short hours later, at the hospital, it was revealed that she had suffered a stroke. Read more >>

 

Social Media and Spreading the Word about Those Who Do So Much Good for Those in Need

By: Brian Nash

Recently my wife and I attended an event held by a newly formed Baltimore organization known as Rebels with a Cause. Frankly, I have to admit, I hadn’t heard of this organization before. According to the event flyer published by the person we are sponsoring, this is a local group of bicycle riders who are joining the Ride for a Feast 140 mile bike ride from Ocean City to Baltimore, MD. (Whew! Glad I’m only a sponsor).

Saturday night came and we traveled to Gertrude’s, a restaurant at the Baltimore Museum of Art which provided the venue for a pre-event gathering of this group of dedicated, good-cause-driven riders. Read more >>

 


Sneak Peak of the Week Ahead

Some topics we’ll be covering next week….and then some…

  • the “debate” rages on about breast milk.” Jason Penn takes an interesting look at this issue in light of some recent, fascinating work done at Johns Hopkins.
  • a report of a new HIV study, but what are the possible implications for medical implications under controlled studies
  • acquired brain injury – what is it all about – what is its impact?
  • … and more….

Have a great weekend, Everyone!






Dogs a huge help for special needs kids

Monday, May 9th, 2011

Dogs and kids just seem to go together. Whether it’s running around the yard and roughhousing or just sitting quietly watching TV together on the sofa, dogs seem to gravitate toward kids. For some special needs kids, however, dogs are more than just a friend and play buddy; they are actually a daily caregiver.

The idea of service dogs for disabled children is a little-known yet burgeoning niche in the world of special needs. Everyone knows about service dogs for the blind. I have to admit that until recently, I had never even considered service dogs for other disabilities, let alone children. Then a friend of mine whose son is autistic mentioned that she was thinking about getting an autism service dog for her son. I was puzzled. Her son suffers from sensory processing disorder so I didn’t understand what a dog would be able to do for him. Kids with autism usually don’t have physical handicaps. But as I talked to her and started reading up on the topic, I found that well-trained dogs can be a huge help to autistic kids, as well as kids with other disabilities.

For autistic children, service dogs don’t offer specific physical assistance, but are highly trained in behavior disruption, which is a major component of autism. As any parent of an autistic child can tell you, behavior disruption is common. It can be different triggers for different children, but the common denominator is that something (usually something benign to most of us) sets off what we laypeople would call an emotional or physical meltdown. This can be a mild tantrum or can be a full-blown one complete with collapsing on the floor and shrieking. Trying to calm an autistic child in the throes of such a meltdown can be a major challenge. It turns out that a dog trained to recognize such behavior and engage the child is a highly calming influence on the child. The dog essentially soothes the child and comforts him or her, shortening the duration and severity of the meltdown, and also cutting down on the number of meltdowns. Rather than getting overly focused on whatever it is that is bothering him or her, the child seems to focus on the ever-present dog and can bypass what otherwise might trigger a reaction.

The dog also gives other support that is less tangible but equally important – giving the child something to focus on if distracted, providing companionship, and assisting with developing friendships with other children. Special needs children are sadly often excluded by so-called normal children which can add a tremendous feeling of isolation for such children. Having a service dog helps break the ice with new kids and provides a constant companion when other children are not around.

Physically, a service dog also helps protect the child and keep him or her safe. One major concern with autistic children is that they are easily distracted and may not think as logically as other children.  They are more prone to wandering off in public because they get distracted by something and follow it, even if it takes them into traffic or near a dangerous body of water.  They may decide to leave the house alone for no apparent reason, even in the middle of the night. Service dogs are trained to restrain the child and act as a second pair of eyes on the child, which is a huge asset to the parents.

Legal fight over service dogs in school

A great piece of news recently came out of Oregon involving an autistic boy named Scooter Givens and his service dog, Madison. For years, Scooter’s parents fought their son’s school for the right to have the dog attend school with him under the ADA (American with Disabilities Act). The school fought back. Finally, the school backed down and agreed to at least try to allow Scooter to bring Madison to school with him. They are starting with part-time hours and working up to full days. If Madison can keep Scooter from having meltdowns, it should be a win-win for both the school and the family.

Cost and Availability

Service dogs are not cheap, nor are they readily available. A well-trained dog can cost  upwards of $20,000, depending on the level of training that is required (which is why my friend is not heading out this weekend to buy one). While this may seem excessive, the cost is actually justified when you realize that it can take six months or more of intense work  to properly train a service dog. That is months of food, shelter and paying a trainer to spend  hundreds of hours training each dog, as well as the additional training time when the dog is matched with the family. It is a labor-intensive process. However, there are ways to meet the cost. Many training facilities seek outside funding to help defray the costs of training, which lowers the ultimate cost to the family. Some families will actually do fundraising themselves to try to pay their portion of the cost. Even with this approach, however, the sad fact is that service dogs are unfortunately out of reach for a large number of people, especially when you consider the other high costs of raising a special needs child.

Other disabilities:

In addition to autism, service dogs are trained to care for people with other disabilities – deafness, mobility issues, and one that I found absolutely fascinating – seizure disorder. Dogs are trained to assist people who suffer seizures by getting the telephone and medicines, and keeping the person physically safe during a seizure. Some dogs can even go so far as to anticipate an oncoming seizure and alert the person to lay down in a safe position before the seizure starts. How the dog knows this is anyone’s guess. So far, science has been unable to explain it. Some researchers theorize that during the earliest phase of a seizure, the person’s electrical brain activity subtly changes a person’s odor which the dog detects. Dogs have a sense of smell that is 300 times stronger than what we have. While this may be the explanation, no one knows for sure so it remains a fascinating mystery.

If you are interested in a special needs dog, there are a number of organizations out there for you to consider. Here are just a few:

4 Paws for Ability:  http://www.4pawsforability.org/

North Star Foundation:  http://www.northstardogs.com/autism.shtml

Dogs for the Deaf:   http://www.dogsforthedeaf.org/index.php

Have any of our readers had any experience with special needs dogs?  I would love to hear your stories.

 

Photo from staplenews.com

 

 

IEP’s: Stand Up for Your Child’s Rights – Be Their Best Advocate

Monday, March 14th, 2011

IEP File Folder from KnowledgePoints.com

Recently I wrote a blog about the general difficulties facing parents who are raising a disabled child. This week I want to address one of those specific guidelines – ensuring a quality and appropriate education for your child. For many children with disabilities, they cannot meet the traditional school criteria because of either mental, physical or other special needs. For such children, an Individualized Education Program, or IEP, is a crucial step. What is an IEP? As the name implies, it is a written education plan that is specifically tailored to your individual child rather than a general plan used for all children. Keep in mind that an IEP is not something that your disabled child may be entitled to. The Individuals with Disabilities Education Act (IDEA) requires that IEP’s be developed for all students with disabilities.

Who creates an IEP? For every child, there is an IEP team which generally consists of the following people – the parents, the child’s teacher, the child’s special education provider, a public agency representative and perhaps other providers such as physical therapists. Depending on the age of the child and the specific disability, the child may also be part of the team. I want to emphasize that while the IEP team is filled with so-called experts in education and disability, the most important person on the team is the parent. There are two key points to keep in mind:  1) you, as the parent, are the best advocate for your child; and 2) never be afraid to stand up to the experts.

On the first point, I encourage you to read as much as possible and become informed on the subject, e.g., what new laws are coming out, what new technologies may be available. Only that way can you truly become an advocate for your child. There are a number of excellent sites on the Internet that give a wealth of information (see links below).

Parents of disabled children tell me that they have learned the hard way that there is only one person who truly cares what happens to their child – and that is the parent (or parents as the case may be). It is easy to go into an IEP meeting thinking that the administrators and teachers have your child’s best interest at heart. That’s not necessarily the case. While these people may be caring and decent people, they have other interests to consider – budgets, time constraints, other students, etc. You are the only one who is truly devoted to getting what is best for your child. Also, you are the one who knows your child best.  Just like when you go into a pediatrician’s office and describe your child’s symptoms and behavior, the same is true when attending an IEP meeting. You have interacted with your child more than anyone else. You see changes, skills, abilities (and disabilities) more than the folks who only see your child at school.  Share your knowledge and make sure the IEP team gets the benefit of your expertise as a parent.

On the second point, it can be difficult as a layperson to question those whom we see as experts. We have all been trained to defer to those with more experience. Unfortunately, some “experts” have been trained to talk down to others. A small personal story — years ago I took my grandmother to the doctor for a small skin rash. The doctor said it was psoriasis. I asked him how he knew it was psoriasis and not eczema, a similar skin condition. I will never forget his answer. “Because,” he said, “I’m a doctor.” He may as well have said, “Shut up and don’t question my expertise.” If someone on your IEP team ever adopts such an attitude with you, stand up to that person and demand answers. It is your child whose future is at issue, not the teacher’s.

As for resources, the rise in awareness of disability and IEP’s has created an entire field of special education law. Not that you need an attorney to obtain an IEP, but you should be aware of your child’s legal rights. One excellent resource that comes highly recommended from parents is Wrightslaw.com, which contains a wealth of information on disability law and special education.

No doubt a number of you have had to deal with IEP issues for your child. What has been effective for you in terms of getting the best plan for your child? What hasn’t worked? What legal entanglements have you run into? What advise do you have so that others may benefit?

Some Source References:

For general information on IEP’s (and one with a special focus on Maryland), I would recommend the following sites:

Maryland State Department of Education

National Center for Learning Disabilities

Education.com

Schaffer v Weast (a summary of the Supreme Court’s decision on burden of proof in IEP matters)

 

 

The daily struggle of raising a disabled child

Thursday, February 24th, 2011

Parents must cope with daily concerns of special needs children

Like many parents, I am blessed to have healthy children.  I take it for granted that my kids are smart, active, well-adjusted.  I don’t even have to think about their health other than the occasional cold or earache or sprained ankle. Others are not so fortunate.

This past weekend I was reading in Maryland Family Magazine an article about a local college professor who wrote a book about raising a son with severe autism.  After writing the book, he assumed that a major publisher would have interest. He ended up being turned down by some agents who told him that without a happy ending or a cure, there was no way they could market the story. Apparently, the public wants stories about disability to have a Hollywood ending. (A publisher finally did come along that agreed to publish the book).

This, in turn, made me think of a good friend of mine (I’ll call her Jane), who has a disabled son (autism spectrum) in addition to three normal children. I hesitate to use the words normal and disabled for two reasons:  1) we live in a politically correct world where deciding what label to apply to anything means stepping into a social minefield; and 2) on the spectrum of mental or physical ability, it can be difficult to say what exactly is normal versus abnormal. I never want to suggest that children with limitations are abnormal. Some parents even bristle at the term “disabled.” Others use the more cumbersome term “neurotypical” rather than the term “normal.” You can see that it can be hard to discuss the topic of disability when we don’t even have terms we can all agree on.

Jane and I often discuss our kids and parenting. She has been very candid with me in describing how incredibly hard it is to raise a disabled child. She believes that no one really wants to hear the negative side of raising a child with special needs. Like the publishing agents that the professor encountered, some people only want to hear about the inspirational side of the story. Truth is, there is not always a happy ending or miracle cure when raising a disabled child, be it autism or cerebral palsy or paraplegia. These are life-long disabilities. There are happy moments, of course, as well as accomplishments both major and minor, but for parents raising a disabled child, it is a daily struggle to make sure that the child gets the medical care and therapy and attention that he or she needs. Parents undertake this monumental and thankless task not because they hope for some Hollywood ending, but because they love their child and they do what they need to do, even if they never knew they had such strength and determination in them.

It’s not all negative, of course. Jane tells me all the time how much she loves her son and how he has taught her so much about herself and about life. She says she cannot imagine who she would be without her son. At the same time, however, she also feels a lot of pain and loss and regret about what she and her family have had to sacrifice in order to care for her disabled son. The daily struggle can truly be overwhelming at times. Jane believes that parents often feel unable to express these feelings for fear of being branded a less-than-stellar parent. As she told me, “There isn’t a safe place to express one’s own doubts about being able to effectively take care of another person who requires so much care. It’s daunting, hard and stressful and for some reason it’s not completely OK to admit that.”  Jane is careful about the sentiments she expresses in public versus those she tells to her friends:

There is the aspect of autism that you are allowed to talk about versus not allowed. I’m allowed to admit it’s hard, but I can’t really say how hard or I’m too negative. I’m just supposed to say it has changed my perspective and I’m blessed.  It has changed my perspective but I’m not blessed. Shut up about being blessed.

While disabilities are all different and every parent’s story is unique, there is a common thread that runs through them all – raising a disabled child takes its toll on the parents and the family as well as the child. The challenges can be enormous. Some of the more common challenges include:

  • Financial:  Finding ways to afford medical care, therapy, services;  working with insurance companies and various state agencies;
  • Educational:  Struggling with teachers and school administrators to make sure that your child is getting an appropriate education and Individualized Education Program or IEP.
  • Medical:  Finding doctors who are willing to take the time to listen to your concerns and diagnose your child; getting referrals to specialists; sorting through the myriad hoops of insurance; finding therapies that work for your child;
  • Social:  The loss of normal everyday activities like going out to dinner, taking trips, seeing friends; not having anywhere to turn to talk about what they are going through.
  • Marital:  A couple often experiences difficulty because of all the other stresses that are created by having a disabled child, as well as the substantial time investment that is required.
  • Family: Other children in the family can be affected because mom and dad have to devote so much time to the disabled child and because the family’s usual routine and activities are disrupted; money can often be tight.
  • Psychological: Many mothers experience feelings of guilt, wondering if it was something they did during pregnancy that caused their child to have this disability.
  • Legal: Figuring out what rights you and your disabled child have, what services you are entitled to.

I can’t say enough about those parents who take on these challenges on a daily basis.  It is difficult to even imagine the level of devotion and commitment that is required.  I welcome all parents to share their stories — the good and the bad — so that the rest of us can try to better understand the reality of raising a disabled child.  In future blogs I will talk about some of these challenges in more detail and where parents can turn for assistance.

Image from metroparent.com

First FDA-approved stem cell trial in pediatric cerebral palsy

Friday, February 12th, 2010

This is very exciting news - First FDA-approved stem cell trial in pediatric cerebral palsy.

Medical College of Georgia researchers are conducting the first FDA-approved clinical trial to determine whether an infusion of stem cells from umbilical cord blood can improve the quality of life for children with cerebral palsy.

While no controlled clinical trials have been conducted to date, previous studies have shown marked improvement in children with cerebral palsy about three months after an initial infusion of cord blood.

“Evidence up to this point has been purely anecdotal,” Dr. Carroll said. “While a variety of cord blood stem cell therapies have been used successfully for more than 20 years, this study is breaking new ground in advancing therapies for brain injury — a condition for which there is currently no cure.”

Here’s the protocol for the study:

Children will begin the study with a neurological exam by MCG pediatric neurologists Elizabeth Sekul and Nicole Brockway. Then, half of the study participants will receive an infusion of their own cord blood while the other half receive a placebo. Three months later, the children will be evaluated without physicians knowing which group received the stem cell infusion. Afterward, children who didn’t get the cord blood initially will receive an infusion. Children will return three and six months later for evaluation.

While this is exciting news for those of us who represent families with children having special needs, including children with cerebral palsy, I cannot even imagine what great news this is for the parents of such children.  Granted, this is perhaps just a first step BUT what a first step.  Here’s hoping it all goes extremely well.  We’ll try to stay up with this story.  Good luck to ALL involved in the project!