Tag Archives: safety

Moments of Grace

I was going to write a post about all the things in my life that I’m thankful for. You know, sort of like those classroom assignments we’d get while we were growing up, a few years after the handprint turkeys and construction paper pilgrim hats. I had the usual list going – my children, our health, my job, our home – the heavies. My extended family, of course, and my good friends, including my fellow bloggers and wonderful readers, those I know and those I don’t. All of you have enhanced my life in numerous ways, and for that I am very thankful.

My ready-to-post list continued with the people in my life who have been most important in my children’s lives – Nigel’s case manager, his teachers, his speech and behavioral therapists, his new wrestling coach, and the Scoutmaster of his troop and all the Scout families who have been so patient and accepting of Nigel over the years, even when his behaviors were more difficult. Where would we be without these wonderful people? Where would we be without the doctor who finally, after many anxious weeks of multiple tests and screenings, identified Aidan’s medical condition earlier this year? And the surgeon who skillfully removed the offending party? I am so very grateful. Words cannot express my appreciation.

My list extended in a broader, global sense to include my trip to Nepal a few months ago and the beautiful people involved with Knowledge for People and AutismCare Nepal. I am thankful to have had the opportunity to learn from them and work with them, and to have had such an amazing experience that enriched my life. Last, but in no way least, I am thankful for those who selflessly serve our country, who sacrifice time with their loved ones, on Thanksgiving and always. We owe them a huge debt of gratitude.

I had thought about it last night before going to sleep and knew exactly what I wanted to write. I knew what I was thankful for and had the whole post planned. And then something happened this morning. Something happened that made me rethink my Thanksgiving post. In fact, it made me think outside the whole Thanksgiving box. I witnessed a near tragedy, and it shook me.

Since Nigel has wrestling practice every day after school and finishes after dark, I drop him off in the morning and pick him up in the evening instead of having him ride his bike. This morning, I pulled up to the main entrance of the school and waited at the stop sign to turn into the driveway. A boy about Nigel’s age started walking in the crosswalk in front of us. Across the intersection, a car suddenly began driving through. The driver, a middle-aged man, was headed right for the boy in the crosswalk and didn’t see him. I gasped, frozen. NO! This was not going to happen! Nigel and I would not witness a boy get hit by a car! In a fraction of a second, I willed the driver to see the boy, to stop, stop, STOP! At the last possible moment, he slammed on his brakes and missed the boy.

Nigel did not seem to grasp the magnitude of what we had seen. In fact, when I asked him, “Did you see that?” he said, “See what?” Then the fact hit me that it could have been him. It could have been my son in the crosswalk. And while that boy was not my son, he’s someone’s son. Someone’s son almost got hit by a car in front of the school today.

But he didn’t. And it made me realize, as I arrived at work this morning and sat in my car crying, that I am most thankful for those moments of grace – when something horrible could have happened, but it didn’t. That all the times over the years when Nigel wandered off and was lost that I eventually found him, unharmed. That all the times when he was little and a sound upset him and he bolted into the street or a parking lot, he was unharmed. That the boy who was almost hit by the car this morning wasn’t.

These are all moments of grace – “there for the grace of God go I” –  a divine favor, a gift. A break. All the times when I’ve muttered, half to myself, half upward, “Can’t I ever get a break?” – now I know. These are my breaks. I’ve had them all along. They are all around me, still. And my thankfulness is boundless.

Wishing you and yours a very blessed and Happy Thanksgiving!

Autism Safety & Risk Management, Part 4

During Dennis Debbaubt’s seminars for training law enforcement and emergency services personnel, the first thing he tells them about encountering an ASD individual in the field is to expect the unexpected. He teaches them about the various behaviors they might see, the communication difficulties they might encounter, and the best ways they might handle those situations. He discusses the sensory issues and anxieties that ASD individuals can have. He stresses that each ASD individual is exactly that – an individual. They are similar in some ways but by no means all alike.

And so, since we parents know how true that is, it’s up to us to use the tools that we know will help our individual children best. We have many resources available to us, but they do no good if we do not utilize them to prepare for emergency situations, not just react to them. With that in mind, I would like to remind you of the links for resources listed in Autism Safety & Risk Mangement, Part 2, including ASA’s Safe & Sound program, safety videos, MedicAlert bracelets, shoe tags, non-permanent tattoos, Project Lifesaver, and personal GPS tracking systems. In my previous post, I mentioned disclosure with neighbors, writing “social safety” teaching into your child’s IEP, and carrying a handout card. I discovered an excellent source for purchasing handout cards: AutismCards.com. They have numerous designs with different content, so you can look around and choose what would be most effective for your child. Most important, don’t forget to fill out and make copies of the Autism Emergency Information Form. All of these tools are valuable resources; we just need to decide what works best for our children and follow through with our risk and safety management.

Last on the list of resources – but certainly not least – is Dennis. Dennis Debbaubt’s seminars are invaluable for helping your local law enforcement and emergency services personnel learn about autism and how to interact with your ASD child. Unfortunately, in many cases Dennis is asked to come and give his presentations as a result of something that went wrong, such as a wandering autistic teen being tasered by police, or a child who wanders away from school and drowns. And then Dennis is summoned to present his special training seminars – one specifically designed for law enforcement personnel and first responders, and the other for parents, teachers, and caregivers. But we shouldn’t wait until something happens. For our children’s safety and our own peace of mind, we need to be proactive.

So – how do you get Dennis, you ask? Two of the best approaches you could take would be to a) contact your state or local chapter of the Autism Society of America, or b) to contact your local Education Service District. You can also see if the two agencies would be willing to split the cost to host Dennis. However you get him, he’s worth it. I admire Dennis so much for what he does, and I feel fortunate to have met him and learned from him. I can’t tell you how glad I am that he presented his seminars in my area. It is such a relief to know that those in my community who are out there safeguarding my son now have the tools to help him and understand him better. And I’m sure that they’re just as glad to have that knowledge.  

Autism Safety & Risk Management, Part 3

One of the stats that really stood out to me from Dennis Debbaubt’s Autism Risk & Safety Management Seminar that I attended is the fact that ASD people, throughout their lifetimes, have up to seven times more contact with law enforcement than the general population. Add to that figure the fact that there is a deficit of training for interactions with ASD people, and we have a gap that needs to be filled. Dennis Debbaubt’s training seminars help to fill that gap, but what’s equally important is parents’ willingness to disclose information about their child. We all value our privacy – and need it to protect our children. But if you want to upgrade safety, Dennis points out, you have to give up a little privacy.

The first thing you can do in your community to help manage risk is to reach out and get to know your neighbors. It is undeniable that the behaviors and characteristics of autism have the potential to attract attention from the public. By disclosing to your neighbors the fact that your child has autism, you will help avoid problems down the road. Talking with your neighbors about your child will tell them that you are approachable and responsible. Your neighbors will know the reason for any unusual behaviors they might see, and they can notify you first if they see your child taking off clothes outside (Nigel has done this), wandering (this too), or destroying property (um, no comment). Knowing your neighbors can also lead to better social interactions for your ASD child, especially when they are older and people would expect them to be more socially adept. If your neighbors know about your child’s autism, they will usually be more understanding. [Note: Some parents fear that this disclosure would increase their child’s risk for abduction or sexual abuse. Dennis Debbaubt has researched this topic, and for parents who are concerned, he recommends reading Ken Lanning’s booklet, Child Molesters: A Behavioral Analysis, which provides characteristics of pedophiles, among other investigative strategies. It was written as a tool for law enforcement officers and child-protection professionals, but it has helpful information for parents who want to know.]

The next thing you can do in your community is to have risk and safety concerns written into your child’s IEP, if you have not already. At your IEP meeting, discuss with the teachers and therapists what the de-escalation plan is for your child, and what they should do if your child is not able to de-escalate. This should be a mandatory part of all IEPs, so that we don’t continue to read news stories about ASD children and teens being arrested and handcuffed because of a sensory meltdown.  Teachers, aides, and therapists are our children’s primary caregivers when they’re at school – they need plans in place to help care for your individual child the best way possible, especially in difficult situations. Schools can also plan educational opportunities for children to learn to recognize and be comfortable with law enforcement and emergency services personnel out in the community, which will help in an emergency situation. These field trips will also help your local law enforcement and emergency services personnel to become familiar with the ASD children in your community and how best to communicate with them and help them.

Another area of concern that can be addressed at school and written into the IEP is “social safety” teaching. Social stories can be used to teach children and teens about important things like public restroom “etiquette” for their safety, and learning appropriate behavior for stores, hospitals, airports, etc. Equally important is being able to recognize “false friends,” people who will target both verbal and nonverbal ASD individuals because they are vulnerable. Our ASD kids can be tricked into doing inappropriate or unlawful things without their understanding, and when law enforcement arrives on the scene, the ASD individual is left holding the bag. As the parent of a verbal autistic 14-year-old, this is one of my greatest concerns. My son is starting to want to be independent, but he doesn’t have the ability to know when people are using him or to avoid questionable situations. Additionally, if he is walking down the street and sees a broken window or some used fireworks or a dead animal or anything unusual that catches his eye, he will stop to investigate for a lengthy time period, and could easily be blamed for whatever occurred, especially since he avoids eye contact when speaking to people and can “act out” when nervous or under stress, making himself look suspicious or like he’s on drugs.

That brings us to the final topic for things you can do in your community for your child’s safety. We can’t expect police to field-diagnose a person with autism, so we need to have a way to notify them. Dennis recommends that either you, or your semi-independent older child/teen, carry a handout card. The handout card should be typed, approximately the size of a business card, and able to be copied and laminated. It should tell the officers that they are interacting with a person with autism and indicate that the person (your child) will be anxious in new situations with new people, will avoid eye contact, may or may not be able to speak, needs to hear calm, direct language avoiding slang and sarcasm, needs extra time to answer questions and may repeat what is said to them, may rock, pace, or engage in self-stimulatory behavior,  may make inappropriate comments or gestures, may give a false confession, and may display extreme distress such as yelling, crying, or physical agitation. It’s also important to have the handout card mention sensory issues with sound, lights, or touch, or a fear of dogs. It should also suggest removing your child from areas that may aggravate sensory issues and escalate behavior. The card should note if your child is prone to seizures and what the officer should do if one occurs. Most importantly, the card should list contact information for parents, caregivers, therapists, or doctors. If your child or teen is at a point where they are out in the community independently, even for a short time, carrying a handout card is a must. Teach them not to run from police officers, to tell the officer that they have autism or Asperger’s, and to say that they have a medical card to give to the officer, but to wait until the officer tells them it’s okay to get the card before they reach for it.

Learning about handout cards really helped to put my mind at ease with my son being alone in the community more often as he nears adulthood. I’ll always worry – that’s a given – but at least I know that there’s a tool in place that can help him in certain situations. Dennis suggests that handout cards can also be helpful for nonverbal individuals when combined with an ID bracelet. These are simple, effective tools for helping to keep our ASD children safe in our community. Using these tools, along with being willing to disclose information to our neighbors and working with the schools to promote safety awareness, will help to manage risk and give us a little more peace of mind.

Autism Safety & Risk Management, Part 2

Dennis Debbaubt began his Autism Risk & Safety Management Seminar with a powerful analogy: How many people wore their seatbelts on the way to this seminar? How many people just put it on without even thinking about it? We don’t think about the fact that we might get in an accident – we just put it on because it’s part of our daily safety routine, like locking doors and looking both ways. We didn’t arrive at the seminar and say, “Well, that was a waste of time, putting on my seatbelt. I didn’t even get in an accident!” And we’re still going to wear our seatbelts the next time we get in the car. Likewise, managing risk for our children is part of our daily safety routine. We don’t have incidents occurring every day, but we still need to have those risk management efforts in place. And in many cases, there is more that we can be doing, even in our own home.

One of the biggest risks for people with autism is wandering, whether they’re at home or they’re away from home. I’ve experienced this with my own son over the years, and wish that I’d had more knowledge of the things I could have done to prepare for such a situation before it occurred. I still would have panicked all the times it happened, but at least I would have had more of a plan in place. The following are some tips to manage wandering and also address in-home safety issues:

  • Secure the home. As I discovered, resourceful autistic preschoolers can quickly move a chair over to doors with locks strategically placed “out of their reach.” Thus, I learned to keep all chairs away from the vicinity of the door, and to move the locks to the very top of the door. Dennis also recommends that when you have to put extra locks on your exterior doors to make sure to upgrade your smoke and carbon monoxide alarms. Put a bell or alarm system on the doors, or – ideally – have a professional locksmith or burglar alarm company install a system. Use technology to your advantage. Have stickers put on all windows near exterior doors alerting first responders that there is an individual with autism in the house. (See ASA’s Safe & Sound program for stickers and more tips.)
  • Use social stories, books, or videos to teach ASD children about safety issues and being able to respond to police and emergency services personnel. This will be most helpful in situations when you (the parent) might be incapacitated, such as a car accident, or in a fire, so that your child will not hide or run from rescuers.
  • Of course, secure poisonous chemicals, cleaners, matches and lighters, tools, knives, and weapons in locked cabinets. Make sure the ASD individual does not have access to the key!
  • Ask your local 911 call center to “red flag” information about your child in their database before you need to call them in an emergency. That way, if and when you call during an emergency, the 911 dispatcher can alert the first responders with the information before they arrive. Providing them with this information before an incident occurs will yield better responses.
  • Prepare an Autism Emergency Information Form and make copies to keep on the refrigerator, near the phone, in your purse and the glove box of your car, and to give to other family members, teachers, friends, trusted neighbors, and caregivers.
  • Consider ID options. Even verbal individuals may have difficulty expressing themselves in stressful situations and would benefit from some type of identification. Options include a MedicAlert bracelet or necklace, a shoe tag, laminated cards sewn into jackets or on belt loops or zipper pulls, and non-permanent tattoos that bear ID information (tattooswithapurpose.com).
  • Check if there is a Project Lifesaver program near you.  If not, use a personal GPS tracking device, such as those featured at Brickhouse Security (be sure to scroll down to read the FAQs). Again, use technology to your advantage: LoJack SafetyNet features a tracking bracelet that utilizes radio frequency technology and has a 6-month battery life.
  • Keep a record that notes all the safety precautions you make. You may need to prove to authorities that you are not a neglectful parent, especially if your child is a wanderer. Some will assume that this is because the child is unsupervised for long periods of time and will tell you that you need to “keep an eye on” your child or “teach them not to wander off.” We parents of ASD children are some of the most vigilant parents around, but those who don’t know us (or our children) tend to make assumptions, and unfortunately we hear those types of comments all too often.

In the next post, I’ll discuss what I learned from the seminar about what you can do in your community to help manage risk and keep your child safe.

Autism Safety & Risk Management, Part 1

Ever heard of Dennis Debbaubt? If so, you probably appreciate him as much as I do. If you haven’t heard of him yet, you need to become familiar with him. And you’ll be glad you did.

Dennis Debbaubt, parent of a young man with autism, has a background in investigative journalism and, as a professional investigator and law enforcement trainer, he has written or co-written over 30 articles and books since 1993, including Autism, Advocates and Law Enforcement Professionals: Recognizing and Reducing Risk Situations for People with Autism Spectrum Disorders. Dennis has also created several training videos which have been viewed by hundreds of law enforcement and emergency services agencies throughout North America and the United Kingdom.

Dennis spends his time traveling and presenting seminars on Autism Risk and Safety. He uses a multi-media approach to train law enforcement, first responders, and emergency services personnel about autism and how it affects individuals they might come in contact with in the field. He teaches them about the sensory issues commonly associated with autism, fearfulness and communication issues that can drastically impact how a first responder can help an autistic individual, and what to do in various situations involving children and adults with autism. In addition to training law enforcement personnel and first responders, Dennis also presents seminars for parents, care providers, and educators, discussing many helpful safety tips in the home, at school, and in the community, and how to develop partnerships with law enforcement agencies and emergency services. Dennis promotes autism awareness and understanding in an area that is of the utmost importance – our children’s safety.

Recently, I was fortunate enough to attend one of Dennis Debbaubt’s Autism Risk & Safety seminars. I came home with pages of notes and helpful materials that I couldn’t wait to share with all of you. More importantly, I came home with the knowledge that we parents have the most influence in how safe our children are – and how proactive we are in our risk management. We parents don’t have all the answers about autism. But you have more answers than anybody else about your child. No one knows more about your child than you do, so share that knowledge with those that need to know. Dennis Debbaubt’s message is to be proactive – don’t leave it up to anyone else. We have to do this for the safety of our children, no matter how old they are.

Over the next week, I’ll be posting segments from the seminar about what you can do at home for autism safety and risk prevention, what you can do in your community, and provide a list of essential resources. Check back soon for my next post on things you can do at home and school to protect your child with autism. We cannot eliminate risk, but we can manage it.

3 Greatest Concerns

A friend of mine recently suggested that I identify and write about the three biggest areas of concern for parents of autistic children. I quickly determined my three, and they are probably universal.

1) Safety

Our children’s safety is a huge life-long concern. We worry because they can have extreme responses to sensory issues, like darting into the street because a bug flew in their face or screaming and writhing on the floor in a public restroom because someone started the air hand-dryer. Our children are also vulnerable to being coerced into doing things that are dangerous or illegal because they are trusting and many of them want to have friends. We worry that they might be abused at some point in their lives, and worse, not be able to tell us. Some of our children have seizures, which can be deadly. We worry if our child leaves the house when unsupervised; some are runners who like to “escape.” We worry about our children injuring themselves or others when they lash out due to frustration or fear. We worry about how people out in the community will respond to them. Safety is definitely a primary concern, and parents must be vigilant.

2) Education

We parents are equally concerned about our autistic children’s ongoing education. We want to make sure that they are in cognitive-appropriate programs and that they have access to the various types of therapy that they need so that they can progress to their optimal level of development and functioning. If our children are mainstreamed, we constantly have to check in to make sure that their needs are being met, that they are not being bullied, and that they aren’t just being sent to the library to watch videos. Our children’s academic and social development greatly affects their potential, and we always want them to be happy, learning, and valued. This involves a great deal of parent advocacy.

3) Future

It may only be an occasional thought for parents of younger autistic children (mostly because we were too busy trying to deal with the present), but once our children hit adolescence, it becomes a major concern. What does the future hold for my child? How will he be in adulthood? What happens when I’m not around to care for him? These are all questions that entered my mind upon Nigel’s initial diagnosis, and infrequently in the ensuing years. About a year or so ago I started to really wonder about his future, to think about it on a regular basis. I have concerns about how independent he will be, how he will navigate the community without my intervention, how he will interact with people. Most importantly, I want him to feel fulfilled with his life, to have a job that he enjoys and people around him who appreciate him. I want him to be happy. Of course, that is what all parents want for their children. But with autism in the picture, parents so often have to orchestrate the outcome, since in many cases we are heavily involved for the rest of our lives. Our concerns about our child’s future become our champion cause.