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Train Your Own Service Dog?
Being Prepared for an Emergency
Bringing Project Lifesaver to Your Community
Cherish What You Have
Disney World

 
Train Your Own Service Dog?
 

People have relied on dogs for a variety of functions throughout the ages, not the least of which is as service animals and companions. For individuals with autism, service dogs are a relatively new concept. They are employed in a variety of ways, from traditional assistance animals to therapy facilitators to companions for socially challenged individuals. Furthermore, many families are desperately searching for ways to keep their kids with autism safe.

Service animals, however, are not free. Prices range from $10,000 to $50,000. It takes time and effort to raise a dog for service work, and not all dogs are capable of the demanding lifestyle. A variety of organizations exist to train dogs, and other animals, for individuals with disabilities. There are even a few organizations dedicated to training dogs for individuals with autism. In the past, however, dogs were often not available to young children. With the rates of autism skyrocketing, parents of young children have been requesting dogs to help their children. From this need, a new era of service animals is dawning.

I, too, want a service dog for my son. My son is a runner, and the time he spends in public is very limited because of this. He must be restrained at all times, either in my arms or in a stroller; otherwise, he will run. As he grows older, this becomes more and more socially inappropriate, not to mention downright dangerous.

My decision to pursue a service dog came one Sunday evening. The first snow of the year had fallen and it was bitterly cold. I opened the back door to let one of the dogs out and my son slipped past me and took off. Wearing a pair of fleece pajamas and nothing on his feet, he ran, full out, through the fresh snow. Temperatures were in the low 20’s. In my pajamas too, I ran after him, knowing that if I lost line of sight, I would likely never find him. About ¼ mile from our house, I realized a couple of things. If I fell and was injured, no one would ever know. If I lost sight of him, I’d have a ¼ mile trek back to the house to alert someone that Sam was missing. Furthermore, my other young son was home alone, not even aware that his mom was chasing his brother who was on a mad dash for freedom. Finally, my son with autism stopped to investigate something in the snow and I caught up with him. He was ecstatic from his bid for freedom, not even the least bit aware of the freezing temperatures and danger of being out in the cold in such little clothing. I carried him home, and within hours, the thought of a dog being able to track him through the snow and lead us to our missing son, or follow him and keep him warm until help arrived, struck up resonance in my heart.

Not being able to afford the sticker price of such a dog, and not wanting to embark on a massive fundraising effort in this economy, I found an autism service dog organization willing to embark on a “Owner Trained Service Animal” program where I would train the dog and they would act as a consultant and certifying agency. While not for everyone, this option seemed the most tenable to me. I was willing to take the time to train the dog, and I thought having the dog from a puppy, and having her bond with the family from early on, could only improve her disposition and usefulness to our family.

In the next article, I will describe how we chose and named our service dog, the equipment and methods we used, and our progress. For more information on training your own service dog, a good place to start is a book called “The Golden Bridge: A Guide to Assistance Dogs for Children Challenged By Autism or Other Developmental Disabilities” by Patty Dobbs Gross. Although a bit heavy-handed on specifically bred, purebred dogs for service work (afterall, many great service dogs working today are rescued mixed breeds), it gives a great overview of autism and how autism service dogs fit in.

Dogs and humans have co-existed for many, many years and that they can help our children in ways that we can not speaks to the places that they hold in our lives and our hearts.

 
 
Being Prepared for an Emergency
 

If you live in the Midwest, you may have been affected by the flooding that is hitting this part of the country. Even if you aren’t, now’s as good a time as any to think about how well prepared you are for an emergency. Whether it’s a flood or a tornado, a hurricane or a natural gas leak, a train derailment leaking toxic fumes or an earthquake, we live in a world where natural disasters and accidents can and do happen. These are, thankfully, rare events, but if one should happen, would you be ready to evacuate on a moment’s notice? Unfortunately, few of us would be.

Considering those of us with autistic children often have special requirements when it comes to leaving home, we need to be more prepared than the average family. For instance, if your child is on a special diet and you needed to evacuate, how easy would it be for you to get food your child could eat? What other things does your child need to be successful outside the home? A communication device? A special toy? Someone who understands his or her special needs?

By taking a few simple steps, you can be prepared for an event such as this. Creating and keeping a Child Info Sheet up-to-date is the first step. Keeping a copy with you and the child at all times is the second step. In addition, having an emergency suitcase packed and ready to go can be a great help if you need to leave without warning. Even a trip to the emergency room can be much less stressful if you have that emergency suitcase packed and stowed away in the closet, containing duplicates of favorite toys, a few favorite foods and beverages, a change of clothes, some movies, medications, and communication aids. 

Emergency situations can be frightening for everyone involved. Being prepared can make that transition into the unknown much less traumatic. See the Caregiver’s Guide for more information on being prepared for an emergency.

 
 
Bringing Project Lifesaver to Your Community
 

If you have a child who wanders, you know the heart-stopping fear of realizing that your child, who was just in sight a moment ago, is gone. No matter how many precautions we take, there’s always the chance that our freedom-loving child may have found a way out. 

Project Lifesaver (www.ProjectLifesaver.org) is a radiofrequency-based bracelet system that is available to public safety agencies (typically, law enforcement). Through these agencies, persons in the community who wander, such as those with autism or Alzheimer’s, are fitted with a bracelet or anklet that transmits a signal. When the person is reported missing, the agency with the receiving equipment begins searching for that individual’s signal from their last known location. This remarkable successful program has saved many lives. 

If you’d like to bring Project Lifesaver to your community, consider contacting your city’s police department, or better yet, the county sheriff’s department. Project Lifesaver on a county level will cover many more families than at the city level. County sheriff’s are also elected officials, and Project Lifesaver can be a great campaign platform. I recommend starting at the top, and trying to garner the support of the sheriff or the chief. Having support at the highest level will aid tremendously in moving forward. Next, funds will need to be raised and deputies or police officers will need to be trained. Don’t be afraid to offer your help. Having a name and face that may potentially be helped or even saved by this initiative makes it more real and gives people the motivation to keep working towards the goal. Be sure to involve the media as positive press for law enforcement agencies is always welcome.

You may face some obstacles when pitching Project Lifesaver. Is there really a need? Where will we get the money? The fact of the matter is, certain groups of people wander, especially those with Alzheimer’s or autism. And the cost of Project Lifesaver (less than $8000), which is quite small compared to annual budgets, is even further put into perspective if the community has just one extended search. The cost of deploying hundreds of first responders and volunteers, search and rescue teams, helicopters, boats, dogs, etc., goes far beyond the cost of Project Lifesaver. Offering your help in fundraising efforts will further aid in your cause, showing both your dedication and your belief in the need for this system.

Most importantly, don’t take no for an answer. If the sheriff isn’t interested, ask the deputy sheriff. If law enforcement isn’t interested, try the fire department, or emergency medical services. If it’s about money, try and get some committed funds first, and then present your proposal with a promise of sponsorship from members of the community.

All of this can be a lot of work for one person; consider combining your efforts with other members of the autism and Alzheimer’s community. And remember, the initiative or one person has the potential to save the lives of many. 

 
 
Cherish What You Have
 

Often times, words of wisdom come when you need them most, and in ways you least expect.

So many times we focus on what our kid’s can’t do, instead of what they can. It is easy to get caught in this trap, with doctors, schools, and therapists all making lists of things we need to work on and things we need to fix, all in the hopes of reaching the holy grail—“normal development.” And it’s not just the pressure that professionals put on us, it’s the expectations we put on ourselves, as parents and caregivers. We want the best for our children, just like everyone else.

A friend of mine has a son with autism who is remarkable similar to my own autistic son. Neither of our children speak or sign or use a communication device (despite all of our best interventions and efforts). Lately, I’ve been struggling with that, knowing my son is quite intelligent and that if I could just find the right method to allow him to communicate, I could open up his world for him.

One day, when I was speaking on the phone with this friend, she said that she’d seen a therapist who commented on what good communication she had with her son. The therapist observed her son’s requests and her response, and how without words or gestures or anything else, they seemed to “commune,” to relate to one another in a way no one else could.

I realized after she said this that it is the same with my son. My son and I have an intimate and unique bond. I understand him like no one else does. Instead of appreciating, or even realizing this, though, I was spending all of my time chasing after other methods of communication without even realizing the strong foundation we’ve already built. I am sure that I will keep searching for ways for my son to communicate more fully, but I’ve learned to take a moment and be happy and thankful for the communication bond we do have.

 
 
Disney World
 

So you are planning a trip to Disney World. Congratulations! When the initial excitement wears off, you may find yourself feeling a bit terrified or daunted by the unknown. How will your child react? Will he or she be overcome by sensory overload? Will he or she have fun?

As always, preparing ahead of time is your number one tool for handling both the unknown and the unexpected. There are several issues to consider, all of which should be thought through before you arrive at the park.

Some of these issues include:
• Is your child sensitive to sights, sounds, or unfamiliar places?
• Is you child likely to wander off?
• How will your child react if s/he becomes lost or disoriented?
• How will your child react under stress?
• Is your child on a special diet?
• How does your child do with waiting?
• How does your child handle public transportation?

Whenever traveling, it is recommended to call in advance to prepare for your safe arrival. If you have special needs, make sure they are in place before you arrive. For instance, if you child will only sleep if you rock him or her to sleep, be sure that the place you are staying has rocking chairs available. Be sure to ask about transportation options to and from the park to make sure they will work for you.

Disney World offers Guest Assistance Card for individuals with autism which will enable them to wait for rides in separate, less crowded areas. Be sure to bring a doctor’s note detailing your child’s condition and needs. In addition to this, be sure to ask guest services about safety protocol, special needs, what you should do if your child wanders off. If your child is on a special diet, be sure to find out ahead of time what restaurants you can eat at, or buy food and eat at your hotel. Plan many breaks during the day, and bring a set of ear plugs just in case the noises become overwhelming. 

 Deb Wills and Debra Martin Koma wrote a book for those of use with special needs kids and going to Disney World. It can be found here: http://openmouse.com. Furthermore, Stacey Dunn wrote a nice article about her experiences with her autistic daughter (http://www.allearsnet.com/pl/dis_aut.htm#1), and Bob Sehlinger and Len Testa give their tips to Disney World here (http://www.allearsnet.com/pl/dis_aut2.htm). Kathryn Watson also wrote a column with good advice (http://www.allearsnet.com/pl/dis_aut3.htm).

Although the planning may take some effort, the results may be better than you ever dreamed. Stacey Dunn has made the trip to Disney World an annual event, citing her daughter’s triumphs. Stacey advises: “Do: Leave yourself open to miracles. My daughter's first words, first snuggles, great vocabulary improvement and first full use of the toilet all happened at Walt Disney World or on the plane ride back. Something about the place has been magical for us, at least.”

 
 
 
 

 

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