Archive for the ‘autism’ 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

 

 

 

 

 

 

 

 

 

 

 

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

USA Today: UM Poll Shows That 25% of Parents Still Believe Vaccines Cause Autism.

Monday, March 1st, 2010

A report just out in USA Today, reflects that 25% of parents are still concerned that vaccines cause autism.  You are no doubt aware by now that the genesis of this fear was a 1998 article in the leading British journal, The Lancet. The author of  that article,  Dr. Andrew Wakefield, was found earlier this year to have acted dishonestly and unethically by the General Medical Council, the body that regulates doctors in England.  The Lancet retracted the article on February 6, 2010.  Dr. Wakefield presently resides in Texas and is performing research into possible treatments for autism.  In an email to The Los Angeles Times, he has denied that he ever stated a link between vaccinations and autism.

In addition to a whole new body of litigation that arose as a result of this article, a more discouraging event took place -many parents, afraid that there were exposing their children to autism through receiving the MMR (measles-mumps-rubella) vaccine, elected not to have their children vaccinated.  As one example, the USA Today article provides the following:

In 2008, unvaccinated school-age children contributed to measles outbreaks in California, Illinois, Washington, Arizona and New York, said Dr. Melinda Wharton of the U.S. Centers for Disease Control and Prevention. Thirteen percent of the 140 who got sick that year were hospitalized.

USA Today’s report relates to an online survey of parents with children under the age of 17.  There were 1,552 responders.

Twenty-five% of the parents said they agreed “some vaccines cause autism in healthy children.” Among mothers, 29% agreed with that statement; among fathers, it was 17%.

Nearly 12% of the parents said they’d refused a vaccine for their children that a doctor recommended. Of those, 56% said they’d refused the relatively new vaccine against human papillomavirus, or HPV, which can cause cervical cancer. Others refused vaccines against meningococcal disease (32%), chickenpox (32%) and measles-mumps-rubella (18%).

Now that Dr. Wakefield’s study has been retracted, physicians are hoping that as the word spreads, more parents will have their children vaccinated.  Some physicians, however,  are taking a more aggressive approach.  One practice group outside Philadelphia has written a ‘manifesto.’

[It] outlines its doctors’ adamant support for government recommended vaccines and their belief that “vaccines do not cause autism or other developmental disabilities.”

“Furthermore, by not vaccinating your child you are taking selfish advantage of thousands of other who do vaccinate their children … We feel such an attitude to be self-centered and unacceptable,” the statement says, urging those who “absolutely refuse” vaccines to find another physician.

“We call it the manifesto,” said Dr. Bradley Dyer of All Star Pediatrics in Lionville, Pa.

Even though it now appears that Dr. Wakefield and his colleagues are fighting back, it would appear that absent true scientific evidence of a link between autism and vaccinations, parents would be well-advised to be aware of the risks they run by not having their children vaccinated and would be further well-advised to familiarize themselves with the history of the so-called science, now held in disrepute throughout the world, that led to this dangerous avoidance of vaccinations.

Autism: Is advance maternal age a true risk factor? New study suggests link.

Monday, February 8th, 2010

The newswires, blogs and tweets abound today with stories about a new study by the UC Davis M.I.N.D. Institute, which is reported to link advanced maternal age with increased risk of having a child with autism.  See the Institute’s Newsroom release on this study.                                            

The researches obtained the birth records for all births occurring in California from January 1, 1990 through December 31, 1999, which included demographics such as the parents’ ages.  Additionally, the researchers obtained the electronic records identifying children born during the study period who later received an autism diagnosis from the state Department of Developmental Services.  After certain exclusionary criteria were applied, the total study sample was approximately 4.9 million births during the study period of the 1990′s.  It was also determined that there were 12, 159 cases of autism, as that condition was defined “as a diagnosis of full-syndrome autism at a California Regional Center.”

The press release reports as follows:

The study found that the incremental risk of having a child with autism increased by 18 percent —  nearly one fifth — for every five-year increase in the mother’s age. A 40-year-old woman’s risk of having a child later diagnosed with autism was 50 percent greater than that of a woman between 25 and 29 years old.

Advanced parental age is a known risk factor for having a child with autism. However, previous research has shown contradictory results regarding whether it is the mother, the father or both who contribute most to the increased risk of autism. For example, one study reported that fathers over 40 were six times more likely than fathers under 30 to have a child with autism.

“This study challenges a current theory in autism epidemiology that identifies the father’s age as a key factor in increasing the risk of having a child with autism,” said Janie Shelton, the study’s lead author and a doctoral student in the UC Davis Department of Public Health Sciences. “It shows that while maternal age consistently increases the risk of autism, the father’s age only contributes an increased risk when the father is older and the mother is under 30 years old. Among mothers over 30, increases in the father’s age do not appear to further increase the risk of autism.”

Dr. Irva Hertz-Picciotto, a member of the Institute and the senior author of the report, in an interview with the Los Angeles Times said, “There is a long history of blaming parents for the development of autism.  We’re not saying this is the fault of mothers or fathers. We’re just saying this is a correlation that will direct research in the future.”

Another member of the research team, Janie E. Shelton, noted that while the data shows that the recent trend toward delayed childbearing contributed about a 4.6% increase in autism diagnoses over the decade -

Five percent is probably indicating that there is something besides maternal age going on because we are seeing a rise in every age group of parents.  We don’t know what the biology is. . . . We can’t say if it is age or something that is a proxy for age,” such as lifetime exposure to environmental pollutants, which accumulate in the body over the years.

The senior author, Hertz-Picciotto, added the following comment( as summarized by the LA Times reporter) for those who may prematurely  read too much into this report:

Older women are more likely to have problems with fertility and require intervention. They may be followed more closely during pregnancy, which would mean more ultrasounds. They are more likely to suffer gestational diabetes and to develop autoimmune disorders, which have been shown to play a role in autism. All are fertile areas for further research.

“We still have a real long way to go” in determining the causes of autism, she concluded.