Archive for the ‘Special Needs Children’ Category

Autism and Wandering – a constant struggle

Wednesday, August 3rd, 2011

I have written before in this space about special needs children, including children with autism. This week I want to turn my attention to one aspect of autism – wandering – and some of the ways parents and schools are trying to keep kids safe. Wandering is something I really had not heard of before, but I’ve since learned that it is a serious danger to children with autism or other cognitive deficits. It is also a major source of stress to parents who are constantly worried about their child wandering off.

All children have a tendency to wander away from their parents at times. When my daughter was two, I lost her at Sports Authority. I thought she was standing right next to me while I was looking at something, then I looked down and she was gone. After a few frantic minutes – and with the quick help of the store employees – we found her all the way on the opposite side of the store looking at balls. She was perfectly fine, but it was terrifying for me.

For reasons that are not well understood, children with Autism Spectrum Disorder (ASD) tend to wander more than non-autistic children. As reported by the Child Mind Institute and others, a recent study by the Interactive Autism Network has finally tried to quantify what has traditionally been more anecdotal evidence about wandering.

According to the responses from more than 800 parents, roughly 50 percent of children between the ages of 4 and 10 with an ASD wander at some point, four times more than their unaffected siblings. The behavior peaks at 4, almost four times higher than their unaffected siblings, but almost 30 percent of kids with an ASD between the ages of 7 and 10 are still eloping, eight times more than their unaffected brothers and sisters.

Autistic children seem to wander for two basic reasons. One is to find something they like, such as their favorite pond or playground; and one is to get away from something they don’t like such as a stressful school environment. It’s not really running away, at least as that term is usually used to describe a child who decides to leave home because of some real or perceived injustice at home. A majority of parents in the study described their child as happy and focused when they wandered off. It is usually a matter of the child being drawn to something that he or she likes. One child referenced in the Child Mind story had a fascination with exit signs. One day at school, the boy wandered off through the woods toward the highway to find his favorite exit sign. Thankfully, a good Samaritan picked-up the boy and returned him to where he belonged.

The danger for children is very real. While concrete statistics are difficult to come by, drowning seems to be the biggest danger (there are some who believe that autistic children are drawn to water). Children can also wander into traffic. Of course, when any small child wanders alone there is the risk of getting lost or being abducted. To further complicate matters, thirty-five percent of families in the study reported that their child is never or rarely able to communicate basic identifying information such as name, address and phone number. This obviously makes it harder for a wandering child to get back home. Even older or more high-functioning children may – due to their social anxiety – be reluctant to seek out help or cooperate with someone who is trying to intervene.

Wandering represents a challenge to schools because it can be very difficult to monitor a child all day long, especially during class changes and recess. The problem, however, also occurs at home. Wandering occurs not just during the day; night-time wandering is an especially big fear for parents of autistic children. Some children have been known to get up in the middle of the night, undo the deadbolt on the front door, and walk-off into the night. The terror of finding your child gone in the middle of the night is unimaginable. Some parents have installed deadbolts higher up on the doors, some have installed alarms that go off if the door is opened. Some parents have gone so far as to have their children wear tracking devices that send out a signal that can be pin-pointed. While all of these techniques can help, there are no sure-fire methods of preventing wandering. It is a constant worry for parents.

The autism community has taken action by getting the Center for Disease Control’s safety subcommittee to assign a specific medical code for wandering, which will be in conjunction with the diagnosis of ASD. By doing this, it is hoped that doctors will more readily recognize wandering as a legitimate diagnosis that they can address with the parents or other caregivers (the new code applies to adults with ASD as well). The American Academy of Pediatrics is also preparing a fact sheet to educate doctors on the topic so that they can better work with parents to try to reduce the incidence of wandering. The new code may also make it easier for parents to seek reimbursement from their insurance companies for alarms and tracking devices, and it may make it easier for parents to argue to their schools that a one-on-one monitor is needed as part of the child’s Individualized Education Plan (IEP). The new code takes effect in October 2011.

Lori McIlwain, Chairwoman of the National Autism Association, recently discussed how to deal with wandering:

The best overall strategy is a multi-tiered approach, which includes educating the child about safety and dangers using whatever means of communication works, including social stories, language and/or visual prompts. It’s also important that caregivers—and schools—work to understand what is causing, or contributing to, the wandering or bolting behaviors so that any triggers may be addressed or eliminated.

Have any of our readers had any experience with wandering? I’d like to hear your stories as to how you deal with it and how it affects your life.

Related Nash and Associates Links:

Dogs a Huge Help to Special Needs Kids

The Daily Struggle of Raising a Disabled Child

Many Parents Still Believe Vaccines Cause Autism

 

 

Photo courtesy of: Issueswithautism.com

Service dogs in school — a fresh look

Friday, July 22nd, 2011
Service Dog and Boy

service dogs

A while back I wrote a piece on the topic of service dogs for kids and mentioned the use of service dogs in schools. A regular reader of our blog then wrote in with a number of comments and questions about the propriety of dogs in schools. To help answer her questions, I recently spoke with Nancy Fierer, who is the Director at Susquehanna Service Dogs in Harrisburg, Pennsylvania, which is an organization that trains and places service dogs. Susquehanna is the organization that placed two of the dogs mentioned in this NPR story.

The ADA and dogs in school

I also did a little more research on the Americans with Disabilities Act (“ADA”) and its impact on the issue. The ADA requires that all public facilities allow a disabled person and his or her service dog (not pets) to enter the premises just the same as a non-disabled person. So is a school considered a public facility? It’s an interesting question. On the one hand it is accessible to the public in the sense that parents and students can freely enter a school. However, if you’re not the parent of a child at the school, can you just walk into a school and roam the halls like you might roam around a mall? I think if you tried that, you would get stopped pretty quickly and asked to leave if you had no valid business there. However, the law appears to be settled that schools are considered public facilities at least for those areas that are open to the public such as administrative offices, gymnasiums during sporting events, and auditoriums during public events. Therefore, schools must be accessible to service dogs in these public areas. For class rooms, however, it’s not so clear. While the law appears to favor allowing service dogs in class rooms, it is being decided on a case-by-case basis because there are other considerations as well – the age of the child, the disability at issue, the ability to control the dog, etc.

How much school assistance is necessary?

I have to admit that when I first wrote on this topic, I had envisioned that the dog and child were a self-contained unit that required little in the way of adult assistance. Ms. Fierer indicated that that is usually not the case. Depending on the age of the child and the level of disability, the child may be able to care for the dog independently. However, in most instances an adult (teacher’s aide or nurse perhaps) is required to pitch in with help giving the dog water and taking it out for bathroom breaks. Ms. Fierer indicated that the dog does need water breaks during the day (feeding can be done at home before and after school). This is usually accomplished by keeping a water bowl in a nearby room – perhaps a nurse’s office or a counselor’s office. Several times a day, either the child (if he/she is old enough) or an adult can take the dog for a drink. The same is true for bathroom breaks (pee only; No. 2 is usually taken care of at home). Again, service dogs do require assistance from the school but from what Ms. Fierer told me, the disruption is fairly minimal and can be worked out with proper planning.

Controlling a service dog

A larger issue is the child’s ability to control the dog. Even though service dogs are highly trained, the owner (in this case a child) must still be able to control the dog before being permitted to take a dog into school. These include such basic commands as making the dog sit, stay, come, leave it, and walk on loose leash. These are some of the common commands that all service dogs must know. In addition, a service dog also receives additional training in a particular disability and learns specific commands unique to that disability, e.g., retrieving specific items, pulling a wheelchair, responding to seizures, search and rescue. These commands must be mastered as well. For example, if an autistic child is in need of the dog to put its head in the child’s lap to help calm him/her down, the child (or a trained adult) has to be able to give the dog that command. If the child cannot give that command to the dog, then it undermines the usefulness of the dog in school.

Because of the demands that service dogs place on the child, very young children usually do not take dogs to school unescorted. Ms. Fierer said she would be surprised to see a six-year-old, for example, taking a dog to school alone. Older children can, with proper training, be permitted to take a dog to school alone. To ensure that the child is capable of caring for the dog, Susquehanna utilizes the Assistance Dogs International Public Access Test. This test requires the owner and the dog to perform multiple tests in a variety of settings to ensure that the dog is well-trained and that the owner can properly control the dog. For children, Ms. Fierer indicated that the testing is usually administered with the parent and child because she uses the team approach – the parent, child and dog are a team. For a child taking the dog to school, however, the parent is usually not there so the child must be able to control the dog independently. Only when a child is adept at controlling the dog should the child be permitted to take the dog to school. Even then, parents have to work closely with the child’s teacher and other school staff to coordinate the details of how the dog will be cared for.

Other concerns

Our reader also asked questions about whether service dogs are a distraction in school and whether they can pose a danger to other children. After talking to Ms. Fierer, it’s my opinion that these are not major concerns. As for being a distraction, Ms. Fierer said that is usually not the case. Service dogs are generally introduced into the school gradually, starting with maybe a half-hour per day and building from there. The children get accustomed to the dog and the novelty soon wears off. Also, the other children need to be educated that this is a service dog and not a pet to be played with. Children can easily learn this lesson. As for being a danger to other children, Ms. Fierer said she has never heard of a dangerous incident happening at school such as a dog biting a child. These dogs are amazingly well-trained and the trainers allow zero tolerance for aggressive behavior. If a dog shows any aggression, that dog does not make the cut for being a service dog. Therefore, I don’t believe this concern is a valid reason for denying a child a service dog.

Training a service dog

In terms of the actual training given to the dogs, Ms. Fierer said that when a puppy is eight weeks old, it starts living with a dedicated puppy handler who is responsible for teaching the dog basic manners.  This time includes classes at Susquehanna twice per month.  This arrangement goes on till the dog is 18 months old, at which time the dog receives about six months of intense training.  About 50-60 percent of training is the same for all service dogs. The rest is devoted to the unique needs of each disability. Before a dog is placed, Susquehanna spends about 2 and ½ weeks training the family that is receiving the dog. Even after placement, Susquehanna continues to do follow-up training – at first on a weekly basis and then gradually declining over the next six months. It even does annual re-testing.

I hope this follow-up addresses our readers’ concerns. Ms. Fierer emphasized that service dogs are not the solution for every child. Susquehanna actually does therapy sessions with families before even agreeing to place a dog to ensure that the dog and the family are a good fit. She indicated that it is a big responsibility to own a service dog and it is not a decision that is made lightly by the dog trainers. However, for the right child and the right family, a service dog can be an amazing asset.

Related Nash and Associates Links:

Service Dogs for Kids

 

photo from servicedogtraining.wordpress.com

 

 

 

 

 

 

 

 

 

 

 

Week in Review: (May 22 – 28, 2011) The Eye Opener Health, Law and Medicine Blog

Saturday, May 28th, 2011

From the Editor – Brian Nash

Last week’s posts by our blawgers were packed with information about a variety of topics ranging from the medicine you need to know about concussions, living with cancer, cerebral palsy resources and the potential risks of overdosing your child with medications.

On the legal front, we began a series I’m personally excited about. We call it Legal Boot Camp. It will be a series for those in our practice jurisdictions of Maryland and Washington, D.C. Our teacher’s face is on – lesson plans in place. We hope you learn some things about the laws that can affect your lives in the areas of personal injury – particularly medical malpractice law.  Our first class took place with a piece by Sarah Keogh that examines the law in Maryland on the right to claim loss/diminished earning capacity. If you’re wondering if you can have such a claim even if you weren’t working when you were injured, Sarah has some information for you. Check it out. Turn in your class card and have some fun.

We wrapped up the week with a piece by yours truly on a wonderful community outreach program by our local baseball heroes, the Baltimore Orioles. Aptly named – OriolesREACH, this initiative has a number of wonderful events, charities and missions that are worth knowing about. One in particular, Shannon’s Fund, is a great program to help those in need while dealing with the financial burdens while dealing with cancer. It is run by the University of Maryland Medical Center. Read about our challenge to our brethren before the bar in the Greater Baltimore Area.

Without further ado, here are the blogs we posted this past week …. and a sneak peak of the week ahead.

Concussions: The Message of Brian Roberts’ Injury Should Not Go Unheeded

Posted by Brian Nash

Anyone who follows sports is well aware that finally the old school mentality of “gut it out and get back in there” following blows to the head are coming (not too soon) to an end. Committees have been formed, articles written and the national spotlight of the media have finally focused on this issue. Those recommendations, debates and guidelines are beyond the scope of this post. Nevertheless, those involved in sports…Read more >

Children’s Medications: Coming Changes and Tips to Avoid Overdose

Posted by Sarah Keogh

My children are both young; the youngest is now a little past her second birthday. In the last few years, we have had both infant and children medication in the house, liquid and tablets, and I have been very careful to make sure to double-check myself if I ever have to medicate either child to make sure that I am reading the correct dosing matrix for the correct concentration and for the correct child. More often than not, I have found that children need medication when their parents are tired. As parents know – children frequently…Read more >

 

Living With Cancer: What to Expect After the Diagnosis

Posted by Jon Stefanuca

About a million and a half people will be diagnosed with cancer in the U.S. this year. The devastating truth about cancer is that about one-third of these people will die from cancer at some point. For most, the diagnosis is unexpected and completely overwhelming.The cancer does not just affect how one feels, it undermines all sense of security and stability. It changes lifestyles and redefines relationships. So often the emotional trauma is equally shared among family members and loved ones. Read more >

New Blog Series: Legal Boot Camp

Posted by Brian Nash

I’m really pleased to announce a new series we’re starting today. If you’re a reader of our blog, you know that we post numerous times a week on health, safety, medicine and related law topics. That’s what we do in our firm – we represent people who are injured by the negligence of health care providers and those who suffer catastrophic injuries in non-medical settings as well. So, sharing what we believe is some good information about medical, health and safety issues is our mission. We strongly believe that our social networking should be about giving good information, engaging in dialogue about relevant issues – just plain good, old sharing. Read more >

Legal Boot Camp (First Class): The Story of Pam – Maryland’s Law on Loss of Earning Capacity

Posted by Sarah Keogh

A 41-year-old woman, Pam, who was laid off from her job as a swimming instructor and swim coach in December of 2009, has been struggling to find a new position for the last few years. Even though Pam had been working as a swimming instructor full-time for the past 18 years, she felt that she needed to jump into a new career while waiting to find a new position as a swimming instructor and coach. Starting in October of 2010, her father died leaving her a rundown home that he had recently purchased with the intent of renovating it. Pam felt that she could put her physical fitness and knowledge of home aesthetics to work, not to mention the ideas she picked up watching renovations shows while unemployed, by renovating the home her father left… Read more >

Dealing with Cerebral Palsy: A Resource for Parents and Family

Posted by Jason Penn

Today’s society has become increasingly dependent on aggregators. We use a variety of methods to assemble and sort information so that we can easily consume it.  Mint.com and Quicken help with our finances and Google Reader helps to manage our online content. A quick search of the internet suggests that the parents of children withcerebral palsy do not yet have an objective aggregator of information to turn to.  Let’s consider this our attempt to provide parents in the Baltimore and Washington D.C. areas with a place to turn. Read more >

Charity Begins at Home: OriolesREACH Program Hits a Grand Slam with Us!

Posted by Brian Nash

I recently wrote a post about our local area charities and civic organizations who do so much for so many in our community. With that in mind, as I was happily reading the sports page in the warm glow of the Orioles’ 12th inning victory yesterday (5 in a row – Go O’s), I came across a piece about a new initiative for our military personnel by the Birds. While looking at the details of this worthy program, I noticed (ashamedly for the first time, I admit) a host of community programs being run by the Orioles. The team uses the name OriolesREACH for the community programs they sponsor, promote or fund. Read more >

Sneak Peak of the Week Ahead

Here’s a sampling of what’s coming next week on The Eye Opener: Views and Opinions from the Nash Community:

  • As families prepare for the upcoming holidays and summer vacation, Theresa Neumann has some important medical advice about what else needs to be included in your travel plans.
  • Legal Boot Camp: Prepare for our second class – get those pencils, pens, iPads and whatever else you need out and ready – there could be a pop quiz on next week’s primary on law.
  • What rights do babies-before-birth (fetal rights) have in our legal system? Do parents who lose a child just before birth have any rights of recovery? You’ll find out next week.
  • Home births are on the rise. Is that a good or a bad thing? Sarah Keogh weighs in on that issue in the coming edition of The Eye Opener

And….maybe even more to come…you can never tell….

Have a wonderful and safe Memorial Day Weekend. Best to All of You and Your Families and Friends from All of Us at Nash & Associates

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