Win a Signed Copy of Kim Stagliano's All I Can Handle I'm No Mother Teresa
KitchenClassroom4Kids on "Cooking With my Son and The Autism Diet"

AOA 2010 Award: Mason Allen Medlam Foundation; Lori McIlwain

Mason The stories seem to come faster now, and with almost numbing regularity. An autistic child goes missing, and there is no happy ending. Ninety-two percent of autistic children wander, and the number one cause of death of those who do is drowning. This year we honor two advocates who have put the issue on the map -- Sheila Medlam, the mother of a child who died; and Lori McIlwain, a national autism advocate who has passionately pursued the cause.

--

 Just six months ago, Mason Medlam wandered away from his home in Wichita, Kan., to a nearby pond; a frantic search was too late, in part because rescuers could not find the pond, and he subsequently died. This devastating loss led his mother, Sheila, to found the Mason Allen Medlam Foundation and to create a Mason Alert program, in which authorities would be provided -- in advance of any emergency -- the kinds of information that might have saved Mason's life: a current picture of the child; fascinations like railroads, small spaces, water; locations of all nearby hazards; whether the child is verbal or nonverbal; how to approach a child who is found.

You can sign the petition and read about the foundation here. Mason Allen Medlam Foundation

None of this, of course, does anything to bring Mason back, and his mother's description of Mason is just as important to share as the legacy she has created in his memory.

"My son, Mason, was born on July 07, 2005.  He was brilliant, beautiful and full of joy.  He lit up our world and was the center of our universe.  Sometimes he would break out into this glorious laughter, and even though you couldn't figure out what he was laughing at, you would join in because the sound of it touched your soul and filled it with joy.

"He was the most incredible child I have ever known.  He loved life and life seemed to love him.  He overcame more obstacles in his life than many adults ever have to even contemplate and he did it with a smile on his face and laughter in his heart."

"On July 27th, 2010, he escaped from our home out of a partially opened window, went a short distance across the street to a neighbor's retention pond and drowned.  Two days later, his heart slowly stopped beating and he died.  As I stood weeping over my son's body, I promised him that I would make sure that the world knew his face, knew his name and understood what we lost when we lost our wondrous son.  I promised my friends and family that I would not let my son's life be in vain.  Instead, I would do everything in my power to try and prevent tragedies like the death of Mason from ever happening again.

Just days after we said our goodbyes to our son, my family and I began the Mason Allen Medlam Foundation for Autism safety to raise awareness on wandering, try to prevent wandering, and protect those who are prone to wander."

--

Lori McIlwain's nomination comes from Wendy Fournier at the National Autism Association:

Lori has been working for our kids since the first rally in DC.  She is the co-founder of NAA. 

I nominate her this year because of her amazing work on the wandering issue.  She first starting working on this back in 2007, long before it was on the radar as an issue affecting the autism community.  Lori was devastated by the horrific death of a young boy in PA who froze to death.  His name was Logan Mitcheltree, and she still keeps a photo of him on her desk.  In response, she created NAA’s FOUND program to provide Project Lifesaver tracking technology to children at risk.

This April, Lori wrote a powerful statement to the IACC asking them to address wandering with urgency, and the IACC invited NAA to give a presentation at their full meeting in October.  

Lori then stepped up her efforts even further by creating the AWAARE Collaboration and recruiting multiple national organizations to work together to address elopement.  She compiled information, created resources, informational materials, graphic design, and extensive content for the AWAARE website. http://www.awaare.org.

In October, she returned to the IACC as requested.  Her presentation was brilliant, it not only outlined the challenges and dangers associated with wandering, but provided effective solutions that the committee could quickly implement to protect our kids.  

The response to this presentation was unprecedented and quite honestly, SHOCKING.  The IACC voted to immediately create a new sub-committee on safety as suggested, and to adopt the goals and recommendations exactly as presented to them.

The subcommittee has already has its first meeting.  They are currently drafting a letter to HHS Sec’y Sebellius with their request for urgent attention and action items to address wandering in the autism community.

Lori’s efforts will no doubt save many lives.  She has the biggest heart, and works 100 times harder for our kids than anyone I know!

--

Here's hoping that because of Sheila and Lori's efforts -- and those of so many more -- 2011 brings the issue of wandering, and the physical safety of all autistic children, front and center in the national awareness. 

 

Comments

Jeannette Bishop

Thank you for sharing with us the light Mason brought to your family and for your efforts to bring greater awareness and preparation to protect our children.

Sheila Medlam

Thank you so much for recognizing our voices and our passion. It is wonderful to know that Mason lives on through such wonderful people who not only love my son, mourn his loss, but understand how quickly our lives were changed.

Over the past few months there have been a few, very few thankfully, that have said, "How could this happen? This family is responsible. This family is negligent." Those few can never understand the pain and sorrow that we live with every second of every day, but all of you do. You have never asked those questions because you see your children in my son's beautiful face and you understand how our world was destroyed in the blink of an eye.

It is very easy to share Mason with all of you. I can not bear to let him go. I can not bear to let the world forget him or let his memories fade. He lives on in all of you and I am forever in your debt.

Thank you for allowing us to become a part of all of your families. Thank you for remembering Mason and keeping him alive in all of your hearts. You will never know what you have all done for my family. You saved us. You gave us the strength to live when we didn't know how we would be able to.

Thank you all so much. It doesn't seem like those words are even adequate for all you have given, but they are all I can offer.

We love you all so much.

Sheila Medlam and family

Andrew Gammicchia

We would like to acknowledge the efforts of NAA, Lori, the Mason Allen Medlam Foundation, in this area. As fellow parents of a now adult son who had some intense challenges with eloping we identified this area of need many years ago and started to address it as often as we could, created materials with no funds, held awareness trainings locally and across the country, and sought grants, like the OVC initiative, to work toward a better understanding of the needs of individuals living with autism and how living safely within communities can be a reality.

In 2003 we created the "Appropriate Response ~ Appropriate Preparedness" model and have provided those materials in many national trainings. We were the first to meet with professionals from Team Adam at NCMEC in 2006, after being called during one of their searches involving a child with autism who was missing, and provided them with information specific to autism and their search and rescue efforts.

In our efforts with L.E.A.N. On Us we've done what we could, offered free resources, and often provided information on how to network and collaborate to meet the needs of individuals more vulnerable when such incidents do occur of this nature. Though as a non-profit agency, whose Board of Directors are volunteer and all first responders who are parents of loved ones with disabilities, we've seen many changes for the good. However there still is not a national model nor consistent message being delivered to address these specific needs, accurate data collection, nor accurate statistics being utilizes to show what is transpiring. We have high hopes that the IACC will be able to join forces with the NIH, NIMH, as well as the Department of Justice and the newly created National Autism Center so that one national training will address all of the concerns that many of us parents, and individuals living with autism have regarding safety in many areas. A basic right of every individual should be one of being safe, and hopefully this initiative will provide a path toward that.

We do also invite everyone to send a message to the IACC about this issue, to the folks at HHS, as well as those at the Administration on Developmental Disabilities. Andrew spoke on this topic within a public hearing, one of four held across the country, on Dec. 2rd in Detroit. His testimony will be available on the site as will our son's who discusses self-determination, choice, and living within his community as an individual with ASD.

Please send in your comments and tell the ADD that this is an issue that should be addressed within their five year plan. The Commissioner of the ADD, Sharon Lewis, also serves on the IACC and hopefully she will address this within the ADD's future efforts. We would like to see them provide funds, via their support of state P & As, DD Councils, and Parent Training initiatives, in an effort specific to safety for individuals living with DD and the formation of a Safety Committee such as the IACC has. The ADD has much more ability, on a national basis, to address this issue with appropriations and agencies already established in each state across the country. They too, as a government agency should listen to the ASD community if we tell them specifically what is needed and provide solutions.

Please submit your stories and requests to the ADD via this link before March 1st:
http://www.envision2010.net/comment_submit.php

We also ask that you sent this AOA story to your families and ask them to support the continuing efforts of these women and their organizations with donations if possible.

Congratulations Lori, NAA, Sheila and your family for this recognition. Please know that Mason and all of the other children that have been lost and their families have not been nor never will be forgotten and will be in our prayers. Much appreciation to AOA also for taking the time to honor these efforts and continue to address this important issue.

Please also visit this link and if you only do one thing to provide for a part of a safety net, this is a very simple one: www.achildismissing.org. Our website also has a variety of materials that can be provided to local first responders without cost or for a very minimal fee, a 911 data base entry sheet example and LEO sample pocket card specific to ASD, as well as the OVC materials created to assist victims of crime with autism.

Respectfully,
Andrew and Carolyn Gammicchia
L.E.A.N. On Us
www.leanonus.org

PS: This is an old presentation, but it does have some good resources in it and discusses what can be done for collaborative community efforts and by parents and care givers to be more prepared for such situations.

http://www.childnett.tv/videos/lectures/carolyn_gammicchia_building_bridges_first_responders

Here too is an article about an example for folks to request a registry be established. Take the 911 data base entry sheet, this article, and ask if your PD has the ability to do so:

http://issuu.com/cincinnati/docs/northwest-press-092210

Katie Wright

Lori is an incredible. She is such a hard working, compassionate and articulate voice for our children- espcially for kids who are nonverbal and severely affected- the ones who cannot respond whne their name is called.
Lori was able to make the IACC committee fully appreciate, understand and ACT(no easy feat)towards the protection of these very vulnerable children.

Thank you to Shelia for being so courageous and sharing her story with the world. I don't think I could do that period- nevermind with half the grace Sheila had.

chantal Sicile-Kira

Congrats to Sheila and Lori! Thanks for all you have done and are doing for all our children.

Tina

This is what I use for my son with PDD and seizure disorder. You can see where they are on any cell phone or computer. The SOS button is used when he has a seizure as it is quicker when they press this and then get to a phone I would be already on my way

http://www.cnaf.net/Review2010.htm
Amber Alert GPS Canada

Amber Alert GPS Canada Inc. was founded in 2009 by Mr. Kenneth M. Corey in Vancouver, British Columbia. Mr. Corey, a highly experienced high tech entrepreneur, envisioned the creation of a Child Protection System which would provide Canadian families state of the art technology tools to protect their children with. After several months of research and thorough investigation into the child protection sector the obvious choice was made. In July of 2009, Mr. Corey boarded a plane to Utah and met with Russell Thornton and his team at Amber Alert GPS and within 2 weeks of that date, Amber Alert GPS Canada Inc. was born.
Special Needs Children

Children PlayingFamilies and caregivers caring for children with autism or diabetes are true superheroes for the challenges and difficulties they often face. The Amber Alert GPS Global Monitoring System is a technology that can assist parents with locating their child in the event they were to wander off. Also, the SOS button can be activated by the diabetic child under a time of sudden stress or need giving the parent a “help me” alert followed by a location map of the child’s exact where abouts.

Autism Grandma

Re: "Ninety-two percent of autistic children wander, and the number one cause of death of those who do is drowning."

This factual statistic is horrifying. Our life with my autistic grandson is wonderful and stressful at the same time, due to constantly trying to stay one step ahead of him due to his desire to get out of the house and run out the door. One time he even jerked his hand away from his mom as she was taking him out to the car and he was in the street before we could catch him because now he can actually run faster than us---I shutter to think what would have happened if a car was coming by at that moment.

I found door alarms that are inexpensive and "chime" for the patio door and the front door. (The alarm ones are too loud considering that they go off every time the door opens, but the chime ones are loud enough and don't get on your nerves.) All of the doors also have inexpensive flip locks at the top, but now my grandson is bigger and drags his table over to the doors to open them so that's why we had to add the chime alarms.

I have also found patio door locks that are installed way up in the top channel, so it can't be reached by a child, but don't get the "spring loaded" kind because they can sometimes lock behind you when you go outside and then you can't get back in.

I also replaced all of our screens with metal so that we could open the windows. Those flimsy nylon mesh ones are so easy to tear or pull away from the screen track. Although I am still afraid to open the upstairs windows even with the metal screens.

Then there's the problem with electric outlets and plugs which is really a problem for all children but with autism it's worse because it's hard to get them to understand that it's "dangerous". I found various kinds on Amazon and have every outlet in the house protected, but last week I caught my grandson sticking his hand right into the toaster to get the toast out [gluten free bread of course]---so now we are buying a toaster oven and putting it over the stove so he can't reach it. IT'S ALWAYS SOMETHING!!!

We have been trying to teach my grandson about the dog, but he is so limited in his ability to cooperate that we have to keep the dog away from him most of the time, and it's so sad because now he is connecting and wants to be around the dog, and the dog doesn't want to be barracaded off in another part of the house, but we will probably just have to find a new home for our dog, and wait until my grandson is farther along in his recovery to try another dog later. I know they have specially trained autism dogs but we don't have money for that, and if we can raise some money this coming year we need that for far infrared sauna and hyperbaric oxygen. I can't even come up with the money yet for the sauna, much less the hyperbaric, so that puts a trained austism dog on the bottom of the list. It is so frustrating, but I know that other families are having more problems than we are, so I can't imagine how they all manage everything, especially those who have no understanding about recovery therapies.

I am writing about all this to share ideas with others, and I keep thinking how amazingly strong and determined Sheila is.
Re: "Just days after we said our goodbyes to our son, my family and I began the Mason Allen Medlam Foundation for Autism safety..." Just DAYS??? I can't imagine the strength and inner fortitude it took for her to channel her grief and pain into advocacy for all of OUR children. Sheila, you are a SAINT, and may God bless you for all of the work that you do on our behalf.

Lisa @ taca

Love this project - great job Lori and NAA
In honor of Mason - Teresa said it best

Teresa Conrick

Turning this heartbreaking tragedy into a national rescue movement is remarkable. Thank you all!

Jennifer S.

This is a fantastic idea and I want to thank Lori for stepping up through her pain to bring awareness to this issue.

Kristine

I commented on NAA's post once about my son's elopement issues. It had gotten to critical point- he had figured out all of our locks and the motivation to "run" had increased. We were involved with police who then called DSS to investigate us for neglect. This was an unbelievable scary time for us- we could not keep our son safe. Lori looked up my number on my facebook page, called me, then she called our police dept. NAA funded Project Lifesaver in our community. My son was wearing a PL wrist band within 48 hours. We can never know how many lives Lori and NAA have saved.

Theodora Trudorn

When I was little I did alot of wondering off. One time I took off to McDonald's, I think I was 5. I crossed a major highway to get there. It is probably because someone up there likes me that I didn't get hit by oncoming traffic!!

So this is indeed a topic that it is a good thing to bring attention to. Especially since all those on the spectrum seem to have a sense of wonderlust. This award is well deserved!

TannersDad Tim Welsh

I am very proud of our community standing up for action in an area in which we need help now. When we speak with one voice politics aside we can move mountains. Thank you Age of Autism for being that voice. Thank you Sheila and Lori for the passion, heart, and effort that changes the world. TannersDad Tim Welsh Director Mason Allen Medlam Foundation for Autism Safety And the new Mason Alert Take Me Home Program.

Maurine Meleck

I first met Lori back in January, 2003 in DC
She has so many talents including writing
and humor, but her greatest talent is in helping children on the spectrum. For her, caring for our cause is truly an understatement. She is also incredibly humble. Congratulations, Lori---here's to you
an honor so well deserved. (and I am sure the homeless man on the corner won't forget you either). Maurine

John Stone

Very well deserved. Congratulations.

Verify your Comment

Previewing your Comment

This is only a preview. Your comment has not yet been posted.

Working...
Your comment could not be posted. Error type:
Your comment has been saved. Comments are moderated and will not appear until approved by the author. Post another comment

The letters and numbers you entered did not match the image. Please try again.

As a final step before posting your comment, enter the letters and numbers you see in the image below. This prevents automated programs from posting comments.

Having trouble reading this image? View an alternate.

Working...

Post a comment

Comments are moderated, and will not appear until the author has approved them.

Your Information

(Name and email address are required. Email address will not be displayed with the comment.)