Posts Tagged ‘special needs’

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