The Oxygen Mask Project

The Oxygen Mask Project was founded by Shannon Knall and Alysia Butler.  A special thank you to both of them for allowing us to share this with our readers.

In the event that the cabin loses pressure, pull oxygen mask toward you to start oxygen flow. Put your oxygen mask on as quickly as possible. Help children and others with their masks only after yours is secure.

Once upon a time, a group of special needs moms started talking about their lives.

They talked about how devoted they are to their children and to making sure that their kids’ needs are met.

But somewhere along the way, they had forgotten to take care of themselves.

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It’s a matter of survival when we fly.  We need to be able to breathe on our own before we can help our children.

We listen when we’re on a plane.

Why don’t we listen in our daily lives?

To care for others, you have to take care of yourself as well. Too often, we feel guilty as parents when we take time to do something that is just for us.

It’s time to realize that when parents take care of themselves first, it’s not selfish.

It’s survival.

It’s how we can keep giving our best to our children.

We started this project to help parents remember that they need to breathe and take a moment to do something special for themselves each day. We wanted to give parents a place to feel supported when they take that moment to catch their breath.

We’re not talking spa vacation.  We’re talking sitting down for a meal.  Drinking our coffee when it’s hot. Or going for a walk.  Taking a nap.  Buying a new outfit.

Guilt free.

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The “Oxygen Mask Project” has two parts.  One piece is our blog.  We feature stories from parents about what they are doing for themselves.  These stories are the foundation for our project – the place where people can sit and reflect and gather ideas for making changes in their daily lives.

The second part is our Facebook page.  Join us there and post what you are doing that day for you.  We will cheer you on.  Others will too.  We want to know things like “went for a walk alone” or “went to the gym for the first time today” or “started back at college”.  We’re cheering people on via Twitter too, so join us there as well.

This project is about us.  Making little changes in our lives and supporting each other along the way.

Strength in numbers.

Let’s take that first deep breath together.

 

Shannon Knall is the mother of three boys; one with autism. She co-founded and serves as the Executive Director of Well Served Tennis Academy, a tennis camp for children with autism.  She has been the Connecticut Autism Speaks Advocacy Chair for Autism Speaks for four years, and responsible for leading grassroots campaigns to secure the passage and implementation of six autism-related bills (including insurance reform), along with securing co-sponsorship of federal legislation from Connecticut’s Washington delegation. She is the founder of the Greater Hartford chapter of Autism Speaks and the Inaugural Walk chair. With the help of a BCBA, Shannon developed the autism awareness Boot Camp used to train and educate businesses, communities and political leaders around Connecticut. For her activism, she is the recipient of the Congressional Certificate of Recognition from Congressman Chris Murphy, and in addition to her leadership in the autism community, serves on the Economic Development Commission in her home town of Simsbury, Connecticut.

Alysia Butler lives in Massachusetts and is the mother of three boys, two with autism spectrum disorder.  She is the managing editor of the SPD Blogger Network, and writes at Try Defying Gravity, her personal blog recounting the joys and challenges of raising three young boys. Her work has been published in The Boston Globe and Bay State Parenting Magazine, and online at Mamapedia, Autism Speaks and The Thinking Person’s Guide to Autism and is a monthly contributor to the Hopeful Parents website.  She also serves on her local special education parent advisory committee in her hometown.

Finding Hope in a One-Way Mirror

Written by guest blogger, Kristin Macchi

It was a foreign place to me, although I wasn’t comfortable anywhere those days. Five strangers in a small room, watching our toddlers through a one-way mirror. Together for 9 hours a week.

Welcome to a new level of autism awareness.

We started talking. Our children’s inability to connect instantly connected us to each other. We began to relax during this precious time when we weren’t the ones sitting on the floor, trying desperately to engage.

Outside of that room, however, I was spinning from what was happening to my world. I wasn’t surprised by the diagnosis because he had always been quirky, but the implications of the label still shook me to my core. I leaned on my husband so hard I was afraid I would push him over, so I tried to be strong, but all I talked about was autism from the moment he walked in the door from work until we went to bed. I thought I would suffocate him. Although we talked non-stop about daily therapies, I wasn’t able to tell him about what was consuming me, that I was afraid I was going to fail our son. I felt like I was drowning. I went from being completely confident to hesitating about every decision I made.

That room with the one-way mirror became the only place I could breathe.

We continued to see each other after that year, and one by one our group grew. The social worker, the EMT, the PT. The restaurant owner. The police officer. The teacher. The life coach with the Irish brogue. They kept joining us.

We are D’MAC – Determined Moms of ASD Children (the “D” becomes a variable on cocktail nights). No matter how different we are, or who we were “before autism”, we are all the same. With each new mom, we hear the mantra. “I thought I was alone. Now I know I’m not.”

We talk about everything, or nothing at all. Our kids play together and do special gym/swim programs that the local Y set up after a meeting with our group. Many of our husbands regularly hang out together now. We have regular “meetings” at the aforementioned mom’s restaurant, it has become our clubhouse and our safe haven.

We are connected. To the core. We see or talk to each other on a daily basis. We are there for each other without hesitation. When my son was having side effects from his new medicine and his doctor wouldn’t respond to me, I frantically called a friend at 9:45 pm. She is dealing with serious medical issues, feeling awful and trying to hold it together for her children (more than one of whom have special needs) in addition to working and running her fledgling non-profit. She shouldn’t have even answered the phone, but she did, and she genuinely offered empathy, support and much needed advice. When I saw her the next day for lunch, she looked fabulous and gave me a huge smile, even though I knew that she felt horrible. She gave me a hug and barraged me with questions: “How is he today? Did you make the calls? Did you adjust the meds? Do you feel better?”

I knew when he got the diagnosis that my life was about to change.  I just never expected it to be for the better. D’MAC has made this happen. I am able to share my thoughts confidently again, in fact I WANT to share my ideas to help my son and his friends. I want to help the parents of children who were diagnosed yesterday and will be tomorrow. I have found a strength I never knew I had inside me. I want other moms who feel like they are drowning to hear me, so they know that they are not alone. I am able to raise my voice clearly because I know that I have the strongest, most amazing group of women I’ve ever met standing by my side, ready to act. Without hesitation.

Kristin lives in Boston with her incredibly patient husband and two fantastic boys.  James, 8, is charming and loyal, and makes friends one video game at a time.  He also has an autism spectrum disorder.  Johnny, 6, is often called Johnny Drama because of his clever wit and flair for the dramatic. She writes about her family’s journey at http://runningtobestill.blogspot.com.

Thanksgiving – A Time for Reflection and Thanks

There’s a chill in the air and the trees are almost bare.  Here in New England that’s a clear sign that fall is upon us and soon the Thanksgiving holiday will be here.  Where ever you are and whatever your situation is, Thanksgiving is a perfect time to give thanks!

Personally, I’m thankful for my wonderful family, my health, my spouse, my caring co-workers, my two dogs and many many other things. I urge you to think about what you are thankful for and to let those people (and pets!) know how much you appreciate them.

As a company, we here at SafetyNet sincerely appreciate our close nit community. Our customers, followers and supporters have played a massive role in our growth and we truly appreciate and want to thank all of you.

It’s a great feeling for us when we hear about success stories like this and this, which proves our efforts to bring loved ones back home with our SafetyNet service really do work and we are in fact saving lives.

As the Thanksgiving holiday comes closer, here are some links that may be helpful to you:

Thanksgiving Travel Tips:
http://www.foxnews.com/travel/2010/11/12/dont-turkey-follow-thanksgiving-travel-tips/

Thanksgiving Cooking and Safety Tips:
http://www.catalogs.com/info/kitchen/thanksgiving-cooking-tips.html

http://www.safetyathome.com/seasonal-safety/holiday-safety-articles/thanksgiving-cooking-tips-serving-up-a-side-of-safety/

 

Thanksgiving Events – Family and Black Friday:
http://www.fchornet.com/2.2211/a-beginners-guide-to-shopping-black-friday-1.2704947#.TsaEiGPfdWA

http://www.wafb.com/story/16074437/best-buys-worst-buys-on-black-friday-2011

http://dfw.cbslocal.com/guide/family-guide-to-thanksgiving-volunteering/

http://fatherhoodchannel.com/2010/10/29/thanksgiving-family-survival-guide-2010/

Thank you for reading and we look forward to a prosperous 2012 and beyond.

Stay safe!

Jason at SafetyNet

The Benefits of Radio Frequency Technology for Finding People Who Wander

By Jennifer Morrissey
Customer Care Specialist, SafetyNet

When I attend conferences and events, I’m lucky enough to meet a lot of parents and caregivers. And it is safe to say that a lot of people don’t know what Radio Frequency is. It is also safe to say that I didn’t know much about it before I joined SafetyNet.

I feel it is important for me to say right away that each family needs to find a system that works for them, whether it’s RF, cellular or GPS. Eloping or wandering is a serious issue that affects those with cognitive conditions such as autism, Alzheimer’s, dementia, Down syndrome, brain injuries and other serious conditions. And while the families have already prepared for a wandering incident by using special locks around the house on doors and windows, alarms and fences – sometimes it is just not enough. I have heard many parents of children with autism describe their son or daughter as “Houdini.” No matter what lengths they have taken, their child is still able to get out.

It is when your loved one gets out of the safe, secure area of your home that the SafetyNet™ Service comes into play. Once you realize he is missing, you will undoubtedly call 911 about this emergency. Since law enforcement is going to do the search anyway, you may want to add the SafetyNet Service to the tool box and help bring your loved one home sooner. The average missing person search is roughly nine hours. Nowadays, you don’t have to go very far to read a story in the news or on Facebook about someone missing overnight or even for days. And with the cold weather coming, every minute counts. The SafetyNet Service could bring them home within minutes.

Now on to why I feel RF is the best locating device for a missing person.

Radio Frequency is not obstructed by concrete. Not steel. Not densely wooded areas. And, it can work in shallow water.

How many times have you had a dropped call on your cell phone? Or maybe you can’t even make cell phone calls from inside your own home or office. Sometimes your cell phone will be in a “dead zone” where you may get a “No Service” message. Basically, you need to be near cell towers in order to use a cell phone. So if you find yourself in an area where there is too much distance between the towers or no towers at all (usually in remote areas), the phone won’t be able to find a signal and therefore you’ll get “No Service.” Essentially, your loved one could be wearing a cellular device and end up somewhere without service and the signal would not get picked up.

Last week, I was using the GPS in my car and when I pulled into an underground garage, it stopped working. The reason for that is because the GPS unit needs a direct line of sight to the sky andsatellite from which it is getting the directions. Because I went into an underground structure made of concrete, the GPS could not communicate with the satellite and lost contact.

Two weeks ago, SafetyNet was used to find a missing teen with autism. The police found him within minutes in an underground subway system of Boston. Radio Frequency was able to penetrate through the subway system and onto land, where officers with the MBTA Police were able to pick up a signal using SafetyNet’s equipment and head to the location of the missing boy. You can read more about that story on BostonHerald.com.

I also mention to parents and caregivers that the equipment that public safety officers use can pick up the RF signal in the SafetyNet bracelet up to one mile on the ground and up to 7 miles in the air. SafetyNet equipment has been used multiple times by aviation units to find a missing person, including this past week in Philadelphia – http://www.metro.us/philadelphia/local/article/975850–police-missing-man-located-with-safetynet-technology.

The last thing I talk about has nothing to do with RF, but I find it incredibly important. During the training that public safety gets from SafetyNet officials, they not only learn about using the equipment but also on how to approach and interact with someone who has a cognitive condition. We here at SafetyNet take the time to learn about your loved one during the enrollment process so that we can share that information in a secure database with public safety agencies. That way, they have a sense of who your son, daughter, mother, father or loved one is before they even reach the scene. Is your son afraid of dogs? Does your father walk with a cane?

The SafetyNet Service uses tried and true RF technology. That along with trained law enforcement, you can feel good about your loved one on the SafetyNet service. Enroll before the end of September by October 15, 2011 and get waived enrollment and six months free.

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Autism, Wandering and SafetyNet

The following was originally posted on Rob Gorski’s LostandTired.com blog.

With all the things in the news lately about Autistic children wandering away, I though it was very important to get this message out. I have been talking with Jeremy Warnick, Corporate Communications Manger at SafetyNet. I truly believe in addressing this problem this is a great way to do it. As you know, I don’t often open my blog to outside posters but this is something I think we all need to take VERY seriously. I appreciate the opportunity to work with SafetyNet to help spread this very important message.

Please share this post so we can get the word out. SafetyNet is giving away 1,500 devices and 6 months of free service. This is a pretty big deal.

PREPARE FOR THE UNEXPECTED
Kathy Kelleher, SafetyNet

With back to school time upon us, the routine many families have established over the past couple of months is likely going to change.   And for children with autism, sometimes it’s changes like this that may elicit anxiety and stress resulting in the child bolting or wandering.

No parent wakes up thinking, “today is the day my child is going to wander and become lost.”  September is National Preparedness Month.  So why not take the time now to prepare for the unexpected?  We’ve put together some ideas that can get you started.  Please feel free to leave your own ideas in the comments section.

A great place to start is the AWAARE Collaboration at www.awaare.org.  AWAARE stands for Autism Wandering Awareness Alerts Response Education.  It’s there where you can find the Family Wandering Emergency Plan (http://www.awaare.org/docs/FWEP.pdf ).  It’s a two page form you should keep in a location that is handy in the event of a wandering or emergency.  Remember, if you notice your child is missing, call 911 immediately.  It seems obvious, but some may think, “oh, I’ll go find him upstairs or in the basement or at my neighbor’s house.”  Meanwhile you’ve had no luck and more time has passed.  Public safety departments would rather be en route to the last place your child was seen and then called back saying he has been found, rather than be called 30 minutes or later after you noticed he was missing.  Every moment counts in this type of situation.

The Family Wandering Emergency Plan goes through the steps of what to say when you call 911.  This is especially a good idea when the person calling may be panic-stricken or nervous.  The Emergency Plan also lists critical information about your child and his diagnosis.

Something else to consider – creating an emergency contact point person who can contact neighbors and make arrangements for your other children and pets, while you are assisting the public safety officials in their search and rescue efforts.

Our SafetyNet website (www.safetynetbytracking.com) has great resources as well.  Wandering resources such as Neighbor and First Responder Forms are available.  The neighbor forms should be filled out in advance of any emergency and shared with your neighbors to provide them with current information, even a photo, about your loved one so that they can help you if/when the time arises.  And the First Responder Forms provides information about your loved one for the authorities in your town to keep on file.

There is also a tip sheet – 10 Ways to Help Protect Your Child from the Dangers of Wandering.  I’m sure you are already practicing many of these, but perhaps there is something there you haven’t thought of yet?

At SafetyNet, we do recommend that you consider a personal tracking device.  Do your homework.  There are many different products on the market now.  Research them and find which one is best for your situation.  What I can tell you about the SafetyNet Service is that it is ideal for people at risk of wandering because it uses Radio Frequency (RF) technology, which has strong signals that can penetrate many physical obstructions.  With an RF device, your child can be found in places that a GPS or cellular device cannot reach, such as a wooded area or concrete building.  Think of the weather conditions where you live.  If your child wandered during the winter, and ended up taking shelter in a building or garage down the street, that signal would still get picked up the law enforcement officers specifically trained to find it.

Now would be the perfect time to try the SafetyNet Service!  Recently, they announced the launch of the “SafetyNet Race to Keep Safe” program, in which 1,500 caregivers and/or families will receive free SafetyNet personal tracking devices for six months!  “Race to Keep Safe” runs today through September 30th October 15th, 2011 (or while supplies last).  Please visit www.safetynettracking.com or call 1-877-434-6384 about this wonderful opportunity.  You can also find us on Twitter at http://twitter.com/safetynetsource.

Thanks for your time and best of luck with any transitions that you may be involved with this fall.

- Lost and Tired

Please Vote for Lost and Tired (just click the link) and help me spread Awareness. Everyone can Vote once a day :)

Win A Chance to Play Golf Alongside SafetyNet, Doug Flutie, Celebrities and Members of the Autism Community

SafetyNet is a proud sponsor of this year’s 12th annual Doug Flutie, Jr. Celebrity Golf Classic, which is taking place on Tuesday, June 21 at the Pinehills Golf Club in Plymouth, MA. The event is one of Greater Boston’s premier charity golf tournaments and has raised more than $1.8 million for the Doug Flutie, Jr. Foundation for Autism.

As part of our sponsorship, we’re giving one (1) of our fans on Twitter and Facebook the opportunity to join our foursome! You’ll enjoy a great day of golf with lunch, dinner, cocktails, contests and more!

To enter, simply follow SafetyNetSource on Twitter and RT our Doug Flutie, Jr. Golf Classic posts or “Like” us on Facebook . The drawing runs today through Friday, June 10. The winner will be announced on Monday, June 13.

Drawing Rules and Regulations

Petition Aims to Keep Loved Ones Safe from Wandering-Related Injuries and Death

change.org

The ICD-9-CM Coordination and Maintenance Committee is considering a proposal that would create a medical diagnostic code for wandering. There is a petition available to sign and show support. Here are just a few reasons why a medical diagnostic code will help protect at-risk individuals with a history of wandering:

- Physicians are largely unaware of this issue; therefore, cannot provide prevention materials or advice. A diagnostic code will increase awareness, advice and prevention-material distribution.

– A diagnostic code will allow for data collection on the incidence of wandering, thereby increasing opportunities for prevention, education for doctors, caregivers, school administrators and staff, first responders/search personnel.

- Many nonverbal ASD individuals are unable to respond to their name when called. We feel a diagnosis code will lead to increased awareness and the development of emergency search-and-rescue response protocols.

- We believe a medical code will enhance schools’ understanding of wandering so that children with a history of wandering will be better protected. Currently, wandering is not looked at as a medical condition, but one of choice or bad behavior. This has lead to a lack of school training, prevention and emergency response. In January alone, two children with autism went missing from their schools.

- Children and adults with ASD who suddenly flee, bolt or run because of a trigger are at greater risk of restraint or seclusion. We believe a medical code will help establish safe protocols that work to eliminate triggers, thereby eliminating the need for restraint.

- We’ve seen reports of parents locking/secluding children in their rooms to keep them from wandering outside. While this is anecdotal information, we believe parents, schools and other care providers need better solutions. A medical code has enormous potential to help provide safe alternatives.

- We believe every disabled individual with a history of wandering — who is at serious risk of injury, trauma or death — should have access to safety devices and prevention materials regardless of the caregiver’s income. A medical code for wandering could potentially provide insurance coverage for those unable to afford critical protections for their children/adults.

You can visit change.org to sign the petition or to submit a personal or organizational letter.

via http://www.change.org/petitions/keep-our-loved-ones-safe-from-wandering-related-injuries-and-death-4#signatures?opt_new=t&opt_fb=t

Parents often behind iPad and iPhone apps for children with autism

Parents of children with autism often give rave reviews to iPad, iPod and iPhone applications designed to support their kids’ special needs and help them communicate. Some of those applications, or apps, were developed by parents of children with autism or other special needs. Blogger Shannon Des Roches Rosa talked to some of those parents about the inspiration behind their work.

My son Leo the iPad enthusiast has benefitted greatly from apps developed for kids with special needs — they provide novel ways for him to communicate, play independently, and entertain himself.

I am constantly impressed by how intuitively designed these apps are, how perceptive of Leo’s needs, how they bring out his talents and encourage his learning through innovative design and interfaces.

As a former software producer, I wanted to know more about the stories behind the apps, so I contacted Lorraine Akemann of app developer hub MomsWithApps. Lorraine told me that many of Leo’s favorite apps were created by parents who wanted an app to properly support their own child’s special needs.

Several of the MomsWithApps developers agreed to allow me to share their stories here — so while this is a longer post, I hope you agree that their stories are inspiring, and worth your eyeball time.

Martin Brooks from MiasApps.com, developer of the iComm and iSpy Phonics apps.

I named my business after my daughter Mia, who has been my inspiration.

via The Personal Stories Behind Awesome Apps for Kids With Special Needs | BlogHer.


Dementia, Alzheimer’s disease and nutrition

This Senior Savvy column addresses the important issue of dementia and nutrition:

Q: My mother, who has Alzheimer’s disease, lives in a nursing home. She is not eating well. She does not feel hungry and cannot be coaxed into eating. I have gone in to feed her, but she takes one bite and spits it out at me. I worry if she doesn’t eat enough, she will lose weight and become malnourished. Is there anything more I can do?

A: As dementia progresses, decreased food intake is common in later stages. Speak with the staff about your concerns. Also, feel free to speak with her primary care physician about your worries. It is important to eat and take in a certain amount of calories. The nursing home can weigh your mother weekly for weight loss. They can offer your mother high-caloric drinks, high-caloric cereal and other foods. These high-caloric items have vitamins and other important nutrients.If your mother enjoys picking up food and putting it in her mouth, consider having available a sandwich cut into bite-size pieces when you visit. Hand your mother a piece and give her time to eat it at her leisure.

via Senior Savvy: Helping your elder with eating – Little Falls, NY – The Times.

Family dog could aid autism therapy

Trained therapy dogs can make a big difference in the lives of some children with autism.

But they’re also expensive.

That’s why a local doctor is recommending some families look no further than their family dog for help.

Higgins the therapy dog is already a big help in Dr. Rolanda Maxim’s autism clinic at SSM Cardinal Glennon Children’s Hospital.

Young patients anxious about having their height and weight measured can watch Higgins do it first.

“In the company of a dog, a child will become more relaxed, more interactive, more social, less anxious,” says Dr. Rolanda Maxim, an autism specialist at SSM Cardinal Glennon Children’s Medical Center.

Now Dr. Maxim is taking the idea one big step further.

She’s recommending select families in her practice use their own family dog to increase interaction at home.

via Family dog could aid autism therapy | ksdk.com.