Sunday, January 3, 2016

5 Steps To No More Autism Drowning Deaths!




Another autistic kid wandered off and was found dead from drowning yesterday

If you have a child with autism and are somewhat active on social media I'm sure you knew that already. 

Autistic kids wandering off is an absolute epidemic. You'll see a news story about that happen several times a week. 

Autistic kids wandering off and then dying, most of the time from drowning, is an absolute tragedy. And happens probably about 6-9 times per year. 

This has to stop. The wandering off and the dying.  I am so sick of reading about it.  It makes me sick to my stomach.

This is one of the only issues that I think the autism community is in complete agreement on. This has to stop. 

And the general public needs to be made more aware of the elopement issues. 

You and I are aware that a boy from Allentown, Pennsylvania was found dead yesterday after escaping during a New Year's Eve party. 



We know that because we're part of the autism community and have our news feed set to feed us all things autism. 

But the general public?  I'm not sure if you live outside of the Allentown, PA area that you know anything about that tragedy. 

We in the always divided autism community need to work together on this issue.  There's 5 main issues that the autism community needs to focus on to properly tackle this issue from all angles.

1)  We need to make the general public more aware of the elopement issues and how common they are, perhaps through an awareness campaign.  It doesn't have to be expensive.  Maybe we can do it all through a targeted social media / #hashtag campaign.  


2) We need to change the laws so that an Amber alert goes out when an autistic kid goes missing the same way one goes out when a kid gets abducted.  Those automatic Amber alerts we get on our smart phones when a kid gets abducted are HUGE!  They hit everyone!  Not just people on social media. We need that ASAP for asd kids who wander!


3) We need to keep fighting for free GPS tracking devices for our kids!  We have one for the king called AngelSense that is amazing! (read my thorough review of the AngelSense device HERE). However, they can be expensive.  There is one called called Project Lifesaver that some cities and municipalities are applying for and giving them to their residents for free.  It seems that there has been more success with folks in the elderly/ Alzheimer's / dementia world getting them for free, but we need to work harder in the autism community to get one of these tracking devices onto every kid (or adult) with autism who needs it.


4) We need to make new autism parents aware of the elopement and wandering and drowning issues as soon as they enter the autism community.  A ton of resources on this wandering and elopement issue can be found on a special site called AWAARE.org

That site is run by the National Autism Association, but is actually a partnership between a bunch of autism organizations that can never agree on anything, but as I said before this is one issue that we can all agree on.

And on this site there's tons of resources

From that site:  Here are a few simple and most effective thing you can do:

Put inexpensive, battery operated, double sided tape alarms on your doors and windows that alert you when one is opened. 

Put a bracelet or stickers inside your kids clothing identifying them and giving a phone number to call if their lost.  Put simple STOP sign stickers near your door to give your kid a visual reminder to stop before departing.

Instead of me telling you what's on the site, let me just cut & paste a page from the site with all the links and resources:

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SAFETY MATERIALS

NAA has created two digital safety toolkits that can be downloaded here:
There are many precautions that can be taken to prevent wandering, but proper response in an emergency situation is critical. AWAARE has created materials that focus on both. Please click here to find our frequently asked questions. You may also want to review safety and response materials, including:
The items listed above are included in NAA’s Big Red Safety Box, along with the following products that can be purchased online:
We also recommend using Stop Sign Visual Prompts for doors and windows.  To create your own, perform a Google Image Search to find an image you like. Then right-click on the image and choose “save image to desktop. Print and adhere to windows and doors.  You can purchase pre-printed adhesive stop signs and other safety items at the NAA website.
————

As you can see their flagship resource is the Big Red Safety Box which you can apply for and includes all the resources in one neat little kit/box

5)  The fifth way that we can reduce the number of autistic kids drownings is the one that you probably hear about the least.  Get your autistic kids swim lessons asap!  These kids are drawn to water.  It is a fact.  Don't let that fact scare you away from teaching your kid to swim.  


My son had no fear of the water when he was younger and would just walk right in.  We signed him up for special needs swim lessons at our local Y as soon as he was old enough and now I'm proud to say that I'm confident that he could tread water for HOURS if god forbid that was necessary.  Get your kid swim lessons ASAP.  There's a link to that AWAARE.org site that lists all the YMCA locations in the US that offer Special Needs swim lessons. http://nationalautismassociation.org/resources/autism-safety-facts/swimming-instructions/  Sign your kid up today.

Those are the 5 main ways to tackle the wandering/ elopement/ drowning issue within the autism community.  I think this is the year that the autism community needs to stand together and start tackling the issues that we all can agree on.  That's what I'm going to try to focus on with my Autism Daddy blog this year.  Wandering/ elopement / drowning incidents are one.  Fighting for those amber alerts & tracking devices is an off shoot.  Bullying is another.  Cameras in special needs classrooms and buses is another.  Let's stand together this year, let's stand united and try to accomplish the things that we all agree on.
But first up, get your kids swim lessons ASAP!  I don't want to see another autism drowning death in 2016!  Maybe we will see you at the Y!  That's where we are headed today!

THE END!


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32 comments:

  1. AMBER ALERT and a picture of the kid with some info about how they are - since autism spectrum is so wide would be nice. How about AMBER AUTISM WANDER ALERT. ya know and what neighborhood last spotted - would be nice. We have alarms on our house so we know if Angel gets out...its nice to have. She is not one who normally wanders but she could. I also love Angel Sence but wish it was covered by grants or organizations - many parents who need it can't afford it.

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  2. Verizon has a GPS device that works as a cell phone and GPS device. You can track down to 3 yards on any smart phone. The device is $80 and is only $5 a month if you already have a Verizon plan.

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  3. Verizon has a GPS device that works as a cell phone and GPS device. You can track down to 3 yards on any smart phone. The device is $80 and is only $5 a month if you already have a Verizon plan.

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    1. 3yards from your phone? Is it a watch style thing?

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  4. Autistic children should also get free swimmingessons. I've tried getting my son lessons, can't afford them.

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  5. I've tried swim lessons and my daughter is now terrified of water. She cries whenever we mention swimming. Unfortunately, we had to take a break but she has learned how to get out of water on her own. I'm hoping to find another swimming program that could help her.

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    1. My son is also terrified of water. He fights when it's time to shower or bathe. We've lost so much money on swimming lessons. :(

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  6. Agreed. But also would love to see some changes in the way we refer to these children. Everyone keeps saying "autistic kid"... No, they're kids with autism. Autism should not define them. This is big in the therapy world, we have been encouraged to use" person first" language.

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    1. I feel like that's a matter of preference and semantics. Fight a battle that matters. Anything that makes a real difference. My son is autistic. For me that defines his situation best. Saying he has autism sounds like it's a disease or condition which could be cured or managed. It is very much part of who he is every minute of every day. I could used the phrasing interchangeably. But again, to each their own.

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    2. This comment has been removed by the author.

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    3. Kathleen, autism is a disease and it can generally be managed. Just read the scientific research, it is costs you nothing and might help you a great deal.

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    4. There is not definitive scientific research as to the cause, exact nature, preventative measures or treatment. The only "management" prescription is generally behavioral therapy.
      If it were recognized as a disease and behavior therapy a recognized treatment, please explain why my health insurance won't cover it.
      I've been living with 2 kids on the spectrum for a decade now. I'm not ignorant.
      My point was to point out that difference people view the disorder differently, and that may influence the language they choose.

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    5. Kathleen, there are about 800 genes already identified, where dysfunction can lead to autism. The Simons Foundation have an online database, if you are interested.
      There are 80 or so treatable inborn errors of the metabolism that lead to MR/ID/autism. These are documented on a site for doctors, made by BC Children's Hospital.
      http://treatable-id.org/
      Mitochondrial disease is a common cause of autism and Dr Kelley at Johns Hopkins has been treating it for years.
      There are tens of thousands of scientific papers that have been published on autism. A great deal is known, particularly if you have a "simple" single gene type of autism. If your autism is caused by multiple hits, it is much more complex, but there are commonly affected pathways. Again it is all in the literature. If you use "google scholar" you can find it all.
      It is all there, as are treatments for specific disorders, but not all 800.
      Living with kids on the spectrum does not tell you anything about their biology. For that you need the science.
      Your health insurance will not cover any of this because your doctor is not a Nobel Laureate who reads thousands of papers at home. They take the simple option of not treating it. A great pity for the few where it is indeed reversible (biotinidase deficiency for example)
      If you want to treat it, you have to do much of the work yourself.

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  7. The term "elopement" might not be as effective in a hashtag campaign as perhaps #AutismWanderer might be. Those outside the autism community may not be familiar with the concept. All these recommendations are on the money. It has to stop.

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    1. I agree. I'm a new reader of blogs from the autism community in order to learn more about autism as I have a young relative with autism. I had to stop and figure out the "elopement" concept. Thanks for your work, community--I've learned so much!

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    2. my son doesn't wander oe elope...he bolts...and runs...He is fast and he doesn't care if he runs into traffic...I hate the word wanderer...it sounds like they are just aimlessly walking around. My son is running, fast and usually going toward something...not just wandering aimlessly.

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  8. We got my daughter a medical alert bracelet that cannot be removed with a pair of pliers. It contains her name, "Non-verbal autitstic", her date of birth, my cell phone number, her father's cell phone number, and our address.

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  9. They should make swimming lessons a mandatory law requirement in special needs schools and public school special ed classes just like they do for PE classes because alot of parents can't afford swimming lessons for there beautiful special kids and also swimming is therapeutic and helps children calm down and concentrate in class.

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  10. It took two years to find someone who could teach our son to swim. It's expensive and he's still not yet safe on water. It should be like teaching to cross a road or cycling proficiency. Here's how our son does. http://rainbowsaretoobeautiful.blogspot.com/2015/11/a-lead-pipe-ball-and-a.html

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  11. Thank you so much for writing this. It's incredibly important. Your Amber Alert idea is perfect!

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    1. I agree! Although it should have a slightly different name. Would this have to be a state by state initiative like the Silver Alerts? Also Wiki states that PA has the Missing Endangered Person Alert (MEPA) System since 2010 which for any missing person - kind of like the Silver Alert. But I don't know if it alerts the phones like the Amber Alerts do.

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  12. Sietske van SchaikJanuary 3, 2016 at 2:49 PM

    I believe a sixth step needs to be setting up swimming programs for our kids.

    In our area trained instructors ARE offering lessons for special needs kids, but I don't know about you, I do not have $150 per private lesson.. Perhaps it should be part of their therapy regime. Swimming does have therapeutic benefits too.

    Will it prevent all drowning deaths? Ofcourse not, cold water and heavy wet clothing are terribly dangerous, and panicking has drowned the most seasoned adult swimmer.. but it is something to add to the arsenal of safety measures. A child will always carry their swimming lessons with them.

    I will think on this more myself, perhaps contact the YMCA locally. I've been working on teaching my eldest to swim, myself.. it's a long process for sure.

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  13. https://www.infantswim.com/

    Is a great place to start for your child to learn how to swim the only drawback is they have ti be young we did with both our children one being on the spectrum

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  14. I think the most important thing you can do to prevent drowning death is to be aware of sensory and seizure issues. A life jacket can be very comforting for a person with sensory issues, and it can save their lives if they end up with sensory overload or a seizure in the wrong place. My brother knew how to swim, but he was given dangerous drugs that caused seizures to control his behavior.

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  15. I am from Allentown, PA (also commonly know as the "Lehigh Valley") area and we are devastated. We worked as a community to search for this child as best as we could.

    I am in support of a public awareness alert system but I have a question. AMBERT alerts are specifically for children that have been abducted, is that correct? If it is correct, should a completely different alert system be created with the same "powers" for alerting the public?

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    1. A Silver Alert is a public notification system in the United States to broadcast information about missing persons – especially senior citizens with Alzheimer's disease, dementia or other mental disabilities – in order to aid in their being found. so why can't they have one for our children.

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  16. I've tried to get my son swim lessons only to be turned down because he's too hard to handle in the water and he isn't safe. so now what do I do with my son who elopes and is very attracted to water. I'm trying to teach him myself but i'm not trained and it's very slow going.

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  17. Many of these are covered in the Avonte's Law bill. We need to push to get the law enacted without it getting stripped down. Here is a link for the bill - https://www.congress.gov/bill/114th-congress/senate-bill/163/text

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  18. https://www.firefightersvsautism.org/puzzle-alert-safety-system-pass/

    Just found this and signed up.....

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  19. I use AngelSense for my seven-year-old son with autism and have for two years. I love the device and recommend it to everyone I know. As a single mom raising my boy on a limited income I can truly empathize with the need to access funding to cover the cost of AngelSense.com and other necessary tools to keep our kids safe.

    I recently wrote two blog posts for AngelSense that outline how to obtain a Medicaid Waiver and also one that notes five additional funding options that would pay for AngelSense and other items our kids need, see:

    5 Innovative Funding Sources for Families of Children With Special Needs - https://www.angelsense.com/blog/5-innovative-funding-sources-families-children-special-needs/

    Get a Medicaid Waiver for Kids with Special Needs - https://www.angelsense.com/blog/get-a-medicaid-waiver-for-kid-with-special-needs/

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  20. This article was from 2/2014
    Feds Clarify How To Apply For Autism Tracking Devices - Disability Scoop
    A week after announcing that the federal government will pay for tracking devices for kids with autism, officials are offering more details about how families can access the technology.
    DISABILITYSCOOP.COM · 1,992 SHARES
    maybe this will help someone

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  21. Why does everyone think the swimming lessons and tracking devices should be free for autistic kids? Those things can save any kid. How many non-autistic kids drown every year? There are plenty of parents of normal children who can't afford swimming lessons. That sort of thing is off-putting and will do nothing to gain cooperation from people outside our circle.

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