Other People's Words

Interview with Sheila Stark Medlam of the Mason Allen Medlam Foundatin

Posted in Uncategorized by Tera on November 8, 2010

Warning: Discussion of death of autistic people.

This is a transcript of the Autism Women’s Network’s interview with Sheila Stark Medlam of the Mason Allen Medlam Foundation who is trying to institute the Mason Alert to help law enforcement and others search for missing people with autism and other disabilities who have wandered off.

[Music]

Sharon daVanport: Good day, everyone, and welcome to AWN radio. We are the Autism Women’s Network on Blogtalk. I am your host, Sharon daVanport, and today is Saturday, October 30, 2010. Joining me, as always, is co-host Tricia Kenney. Hello, Tricia.

Tricia Kenney: Hi, Sharon. How are you today?

Sharon daVanport: Um, I’m okay. How are you?

Tricia Kenney: [Laughter] Busy, busy, busy.

Sharon daVanport: Okay. Well, I think we all are this weekend, if you celebrate Halloween, anyway. [Chuckles] It’s been a little bit kind of a crazy week, with my daughter going to a few Halloween parties and stuff, so it’s been kind of fun. If you like that kind of thing. [Laughter]

Tricia Kenney: Yeah.

Sharon daVanport: Yeah, well. And you’re getting ready for your move? I know all our listeners know you’re getting ready for a big move back to Wisconsin. How’s that going?

Tricia Kenney: It’s going really well. We have our moving truck here, and we’re getting ready to load her up and head on out down the road. [Chuckles]

Sharon daVanport: Nice. And you’ll be able to get those kids into that really wonderful school up there—your sons who are autistic. That’s wonderful, Tricia.

Tricia Kenney: Yeah. We’re very, very excited.

Sharon daVanport: Good. Well, today is going to be a very emotional day. I hope not too much on our end. We don’t want it to be that kind of show, but we just want to give a disclaimer and let everyone know that this is quite an emotionally-charged show. We’re just so grateful to our guest who’s going to be joining us in a few minutes, Sheila Stark Medlam. Sheila is the mother to a young autistic son, Mason, who recently drowned. He was a wanderer, and autism and wandering is something that’s been really huge in the news. It’s really big in our community, in the autism community, because it’s a reality. And it’s a very sad reality.

Sheila’s going to be here because she is going to be sharing with the autism community about the Mason Foundation, which she and her husband Kenneth have founded in honor of Mason. It’s just a really, really great program, and she’s going to tell you about it. I don’t even want to get started on that. But Trish, I know that we’re going to be announcing our winner today, and I thought that maybe we should go ahead and do that at the beginning of the hour. Juat let everyone know who the winner is and a little bit about the GPS location device drawing, so that we can go ahead and just get through the show after that.

Tricia Kenney: Sure, we can do that. First of all, every month we are giving away a GPS location device plus one year of free service, and that’s being sponsored by LifePROTEKT. They’re such a wonderful company for doing this. They understand the need in the autism community, the issues that so many of us deal with with our children and elopement and the danger that poses, and the tragedy that could befall any of us in that situation. So we’re very grateful for them doing this for us every month. Do you want to go ahead and say who the winner is, then, Sharon?

Sharon daVanport: Sure, sure. I first want to say: If you’ve entered the contest, even if you entered it a few months ago, every month we’re still putting your name back into the drawing, and you’re eligible for up to one year before we start it back over again next year. And we’ll let everybody know in plenty of time. We’ll contact you and let you know to re-enter, if you still want to be in for the drawing. So I just want everyone to know that before we announce the winner. Don’t think that if your name’s not drawn this month, you don’t have a chance next month. It is something that, like I said, we’re putting your name back in every month.

But this month, we received a letter. The winner that we drew this month, we received a letter from Christina Braun about her daughter, Isabella, who’s eight years old. I’m going to read that letter that she sent in. She says:

Hello, AWN,

My daughter Isabella is eight. She has autism and PDD. Isabella is a wanderer. She wanders away from her school classroom and has been found out in the middle of a busy road during her school day. Her teachers are overwhelmed with their 32 special children in her class. Her last episode of wandering just in March 2010 resulted in news coverage on the channel 10 news.”

She said you can also search for Isabella Herrera, for Lathrop School. She goes on to say:

“We cannot afford a GPS locator and her dad has been laid off since 2009. He has applied for well over 300 jobs since then. I have PDK–polycystic kidney disease–and cannot work. Being older parents, this would bring us some peace of mind while she is away at school. Isabella would most often benefit from this and would be safer. We are so terrifed of what else may happen to our precious child. At home we have a total alarm system that makes loud noises when she tries to get out. At school, they really have nothing to protect her. Thanks so much for holding this giveaway.

Sincerely,

Christina Braun

So, I’m just so happy to say that we will be contacting Christina and letting her know. And I know, Tricia, you’ll take care of that, right? [Chuckles]

Tricia Kenney: Definitely.

Sharon daVanport: You’re the one who contacts everyone. We’ll have to let her know that we’re just so happy that Isabella will be getting that GPS protection device.

Tricia Kenney: Right. And what’s nice is that they can set a perimeter with it, so if she steps outside of tha perimeter, people get notified. So it’ll really, really help to add to the safety measures that they already have in place, and hopefully keep Isabella a little bit safer.

Sharon daVanport: Right.

Tricia Kenney: Congratulations, Christina.

Sharon daVanport: Yes. Congratuations to Christina. All righty, then. I guess we should get started with the show, then, and bring on our guest, Shiela. Again, Sheila’s going to be telling us about the Mason Allan Medlam Foundation for Autism safety in honor of her son, Mason. Welcome to the show, Sheila.

Sheila Stark Medlam: Thank you very much for having me. I really appreciate you spreading awareness and helping to bring all these important issues to the public’s notice. I think that’s absolutely essential, so thanks for having me on the show.

Tricia Kenney: It’s really our pleasure. And thank you so much for taking the time to be here. I know you’ve been so busy, and you’re dealing with so much. It is an important topic. I know no one realizes that more than you. So I guess we could start with you talking about how you started the foundation.

Sheila Stark Medlam: Okay. Well, on July 27—well, actually, it really started on July 26—our air conditioner broke in our home. I went to the store and got some fans, because it was going to be a couple days before it could be fixed, and I set one of those fans in my oldest daughter’s window and closed the window halfway over the fan. I just didn’t really think anything about it, which I should have, and I blame myself every day for not thinking about it.

But the next morning I woke up and thought about staying home, and decided to go ahead and go to work. About 10:30 in the morning I got a phone call from my daughter, saying that Mason was missing and they couldn’t find him anywhere. So I called 911 and my daughters called 911 and we started the search for Mason. There were a lot of errors made that day, but I guess the main thing is that I asked 911 [unknown] the pond that is near our house, and unfortuntely, they just didn’t quite comprehend how an autistic child could wander that far. It’s about a quarter of a mile from our home.

So I raced home, and by the time I got here, there were police and EMS and firefighters everywhere. But unfortunately, there was nobody at the pond. I went to the pond and got out of my car, and the first thing that I saw was something pink in the water, and I realized that it was my son. I pulled him out of the pond and started CPR. They were able to resuscitate Mason at the hospital, but unfortunately, he died a few days later.

So immediately, we started the Mason Allen Medlam Foundation for Autism Safety, and it’s actually progressed into more of a foundation for all cognitive disorders that have children that have an absolute love for life, absolutely no danger awareness and the propensity to wander. It’s a much, much bigger issue than just the autism community. There’s Down Syndrome, global disorder—just a lot of disorders that have these precious, [special?] children that the world can harm them. And they want to get out into that world, and they end up either in dangerous situtions or losing their life, like Mason did.

And the main focus of the foundation is, of course, the Mason Alert. We have been so blessed to actually have a program [breaking up] to get the Mason Alert into that program, and it will be available [unknown] 911 communites that [unknown]. What that’ll do is it will give first responders immediate information that they need to bring our children home.

We don’t believe that this is the only step to take for wandering. We absolutely believe that you have layers and layers and layers of security around your child to keep him or her alive, and that includes things like technology and LifePROTEKT, which has an absolutely fabulous program. Or Project Lifesaver or just…Layers and layers of security. Let the neighbors know that your child is a wanderer. You have to just take incredible measures. It’s sad that there isn’t more available in every single community, but what we plan to do is we plan to change the world in Mason’s name. We plan to protect every child. We don’t want to hear any more stories about children wandering from their homes or their daycares or their schools and losing their lives. We’re the advocates for those children.

Tricia Kenney: First of all, I’m so incredibly sorry for your loss, and I know nothing can ever fix that. I think it’s just incredible what you decided to take on after that. Could you explain in a little bit more detail what exactly you were planning with the Mason Foundation? How that would work?

Sheila Stark Medlam: What we learned with Mason’s death is what could save our child. That is educated first respondes who know how to interact with the disabled community, and also making them aware of all the dangers around them. I’ll briefly just give you what the Mason Alert is. What it would include would be a current picture of the child; the child’s address and contact information; their fascinations—for exmaple, water, which is primarily the number one focus of a lot of autistic children, railroads, small spaces. Some kids die in small spaces like cars or just from suffocation or heat exhaustion. And it would also include he locations of all nearby hazards, such as tracks, pools, ponds, abandoned houses, busy intersections.

They would notify if the child is verbal or nonverbal. A lot of our children, even if they can speak, which a lot of them cannot, when they’re in a dangerous situation or a panic moment, they completely lose that ability and they are not able to communicate their needs. They become fearful; they can’t say their name or their address. So that would be a very important tool for first responders to have. They need to know if that child is verbal or nonverbal.

They also need to know how the child reacts under stress. Do they hide? Do they run? Do they fight? Do they shut down and just stand still? And [unknown] to approach the child and who needs to approach the child. We just actually were able to read something online about an officer who saved a child from drowning the other day—Officer Wilson. The reason the child went into the water is because he panicked as soon as he saw the people surrounding him, so he ran into the water. And luckily, the officer was there. It’s just a miracle that there were the right people there at the right time. He dropped a [unknown], he ran into the water and he was able to save that child.

We also believe that this alert should be for anybody with a disability or a cognitive disorder that has a propensity to wander, no matter what their age is. The sad thing is that [unknown] the alerts that are available to our nation are the Amber Alert and the Silver Alert, and those are absolutely necessary—absolutely necessary. But they don’t come into play when our children wander. Neither of them. There’s also absolutely no protection from 19 to 64 for your child who has a disability, and these disabilities do not disappear at 18. They certainly do not disappear from 19 to 64 and then just suddenly reappear at 65. So there has to be change.

Tricia Kenney: Right.

Sheila Stark Medlam: And in order for there to be change, we have to demand that change. I lost my son. I can never get him back [crying] and…I’m sorry.

Sharon daVanport: Oh, that’s okay.

Sheila Stark Medlam: The absolute center of our world.

Sharon daVanport: Right. Sheila, this is Sharon, and I am sorry for your loss as well. I wanted to ask you: When you were saying a moment ago that this is something that’s absolutely needed, what have been some of the obstacles, [and] what are some of the encouraging things you’ve seen this past week as well—if you could touch a little bit on both—on getting this foundation and this system set up for a Mason Alert?

Sheila Stark Medlam: I’m very new to the advocacy end of this. I was a very happy mother who was very happy to stay inside the home and just my own life, because I was thrilled with my life. So [crying] I’m sorry. Advocacy is something that is new to me. So what I’ve seen recently is that there are a lot of great programs, but what is happening is nobody is working together. There really needs to be more integration of all of these programs. They need to realize that they’re all absolutely essential to keeping our children alive.

Also, I think that there’s budget issues. People think: “We can’t afford to put that alert system in place.” Well, yes you can, because it’s free. That’s what the Take Me Home program is. It’s a registry for parents to utilize. I would encourage every single person that is listening to this to go to the Take Me Home program website and actually watch the video of Officer Jimmy Donohoe talking about the Take Me Home program. It works two ways. We’re just so grateful that they’re going to be integrating the Mason Alert into the questionnaire.

What it does is, say, for instance, they found your child just out on the street, and your child is nonverbal and can’t communicate anything. If you’ve registered your child with that program, they can sort through their database and match your child’s face to the face that they have on their computer, an d then they have all his information. It also works in the reverse. If you call 911, they instantly have all the information that you registered.

And I’d like to point out one thing. Here’s a mistake that I made, and I think that it’s essential that all parents hear this. When I called 911, I was terrified. I was frightened; I forgot things. There’s a large windmill by the pond, and I’ve talked to several of the officers that searched for Mason, and they couldn’t find the pond because it was never [unknown] the police. If I had said: “There’s a large windmill beside the pond,” they would have went right there and Mason would still be alive. By the time I’d pulled him out, he’d only been gone for about five minutes, and they’d been on the scene for 17.

So when you actually register your child with this program, you’re doing it in a moment when you’re calm, cool and collected, and you can actually think about information. There’s a pond cattycorner across from my house, and you know what? There’s a windmill beside it. That’s good information to put down in case Mason or Meg or Sarah or whatever the name of your child is actually gets to that pond. So you’re doing it in a moment when your brain works. I am telling you, your brain does not work when you have that gut feeling and you know that, at the end of the road, [crying] your life is going to be changed. And I knew, and I think every mother—I’m sorry—I think every mother knows the instant their child isn’t with them any more on this earth, and I knew what I was going to find at the end of that road.

So that is what we are hoping to do. We don’t want any other family to have to endure what we’ve endured. It’s terrible. It is awful. It is horrible, and there are things that can be done to prevent it. We were very lucky to be able to present at the IACC. I know that there have been people fighting for years to get wandering to the attention of the people that need it, and we were so honored to be sitting in that room when they formed a subcommittee to focus on these issues. It was an honor to be there and to just know that things are going to start changing. There are going to be more people aware of these issues. I’m sorry I keep crying.

Sharon daVanport: No. That’s why we want you here to do this, yeah.

Tricia Kenney: Yeah. And it’s so important for that education to happen with first responders, too. I think that so many just assume: “Well, we go out there and we call the child’s name and we’ll find the child. They’ll respond to us.” Unfortunately, that just doesn’t happen with our children, and it’s terrifying. We know that, but the law enforcement doesn’t.

Sheila Stark Medlam: Well, and what you need to realize is, we didn’t just lose our son. Our community lost a son. Every one of those first responders lost a son that day, and they all grieve for him, and they all mourn for him. So it changes a lot of people’s lives when you lose someone as precious as Mason. It’s very, very sad, and they’ll never look for an autistic child the same way again. I can guarantee you that.

Tricia Kenney: Right.

Sharon daVanport: Right.

Tricia Kenney: I’m sure.

Sheila Stark Medlam: That’s an awful way to learn that lesson, so those lessons need to be taught way before that 911 call is ever placed.

Tricia Kenney: Have you been working in conjunction with L.E.A.N on Us at all? I know that they have a really good program where they go out and teach about autism to first responders.

Sheila Stark Medlam: Absolutely. I think Carolyn Gammmicchia is probably one of the strongest women I’ve ever met. She’s got a very deep concern for the autism community and not just the autism community, but she also feels very strongly for first responders. She understands those people and she knows the grief that they go through when they lose a child—any child. So I think she has an exceptional program and we’re very proud to say that we support her 100 percent. The thing is, we need that education nationwide. Why isn’t it nationwide? That’s the question.

Sharon daVanport: Right.

Sheila Stark Medlam: So we have to fight as parents. We have to demand change, because it will not come if we do not demand it.

Sharon daVanport: Sheila, L.E.A.N. on Us is listening today. They are in the chat room. They’re listening today, yeah.

Sheila Stark Medlam: Wonderful. Well, I can tell you, she is one of the strongest…I have never spoken with Andrew, her husband, but I’ve spoken with Carolyn and she’s one of the strongest women that I know. If anybody’s got the determination, she certainly does. So request these people to come to your community. Get the funding. You have to fight. I’m ashamed that I’ve never fought. That’s what I’m ashamed of. I’m ashamed [crying] that I never fought.

Tricia Kenney: Well, you didn’t know. When you’re going through life and you’re not really a part of that whole advocacy community, you just don’t realize. I was the same way. I didn’t realize there were so many people out there working for this cause and that fraction of this cause. You just don’t realize the world that’s out there all the time, because it takes a lot. You’re trying to raise your family and you have these special circumstances that you’re trying to deal with on a daily basis. It feels like: How can you take on more than that?

Sheila Stark Medlam: Well, I think we all have a responsibility to at least know. I don’t want anyone else to have to learn the lesson the way that I learned it. So that’s why I get up every day. It would be so much easier to go and be with my son. That is where I truly want to be, is with my son. But I promised him as his heart stopped beating that I would make sure the world knew his face; the world knew his name, and the world knew what we lost the day that we lost him.

I feel like I’m keeping that promise to him by telling his story and sharing with parents that you’re not alone. I always thought Mason was the only child that did what he did. It never even crossed my mind that there were others out there that had children that wandered. I just thought it was a little quirk in his personality. So to find out that it was such a big issue after we lost him was just a stunning revelation to me. We’ve had thousands and thousands of people that have sent in e-mails and they’ve signed up for the Mason Alert. You need to realize that the Mason Alert Take Me Home program is just a registry. It is not an alert, so we still need an alert system for children.

Sharon daVanport: Can you explain how that works, then, Sheila? Can you explain how that works?

Sheila Stark Medlam: Sure. Let me just tell you. A registry is a collection of information. This is something where you would go down to the police department, they would take a picture of your child, and you would fill out a questionnaire and your child would be registered. You would need to update that photo [regularly?] on an annual basis, because your child’s face obviously changes as he or she grows older.

What an alert is, say for instance you take the child to Florida and you live in New York. All the sudden you turn around and your child’s not there. An Amber Alert would be issued if your child has been abducted, but if your child’s not abducted, there isn’t an alert that goes out. So we need an alert system that flashes across the TVs and flashes across the boards if our child wanders. A lot of parents fear: “Well, I’m just alerting all the perverts in the world that my son is missing,” and I can understand that fear. It took 17 minutes to lose Mason, 17 minutes for his life to be gone. So you have much better odds finding your child if there are more people looking. That’s what an alert does.

Sharon daVanport: Right.

Tricia Kenney: And there needs to be something formal like that. When I first moved to St. Louis, my son also was a wanderer. He would just take off. And I was like: “Well, the least I can do is talk to the police department and the fire department and let them know that my son is here and that he does this. And give them a picture, his name, and let them know [to] immediately look at the railroad tracks.”

Sheila Stark Medlam: Right. Absolutely.

Tricia Kenney: And so I’d called the police department and tried to give them that information. They said: “We don’t have a place to store this information.” And they said: “We can’t keep this information for you.” And I’m like: “I’m trying to prepare you for when this stuff happens.”

Sheila Stark Medlam: Because it’s going to happen.

Tricia Kenney: Right. And it happened a ton of times since we lived here, and the police department knows my son very well because they’ve had to go and find him quite a few times. But, yeah, they don’t have any way to store this information. All you can do is just call 911 at the time when it happens.

Sheila Stark Medlam: That’s not good enough. That’s not good enough.

Tricia Kenney: Yeah, it’s not. And so how do we incorporate this program into our system?

Sheila Stark Medlam: First of all, the Take Me Home program was created after Jimmy Donohoe went to an autism conference. He listened to parents and their concerns on wandering, and there was discussion about bracelets and tags and things like that. He thought: “That’s just not good enough.” So he went to the police software developer—so this is an actual, official police software developer—and said: “Okay, let’s create this registry.” They did they and then they offer it for free to any police department that requests it.

So there’s absolutely no excuse. But what it takes is parents saying: “Listen, we’re not going to sit here and let you not integrate this into your 911. It seamlessly integrates into your 911 system. So put it in place and do it now.” On November 10, we’re going down to Pensacola to integrate the Mason Alert questionnaire because we think that it’s more focused on the disabled community; they’re actually probably going to be the ones that the police are searching for.

So they’re going to work with us, redevelop the software and then it will be available. And all you have to do is have your police department request it. Unfortunately, a parent can’t just request it. In the beginning, they had some parents—and they couldn’t have been parents of autistic children, because they wouldn’t have done what they did—but they got the software, renamed it and then tried to sell it. So they only give software to police departments, so a police department has to request it.

And it’s also available not only in the United States, but in places like Canada. I think any English-speaking country, they would be more than willing to give it to you. I don’t know that it’s set up for any other languages: that’s something that I’ll learn on November 10, but it’s certainly a guide that any other country could use. [Unknown] in Canada.

Sharon daVanport: So if we want to support the Mason Alert, we want to be involved in this movement, what is the first thing we need to do and what is the website? I want to walk our listeners through this, and anyone who wants to participate. What is the first thing that you recommend we do?

Sheila Stark Medlam: Well, what I recommend you do, first of all, to protect your child, is to go to places like L.E.A.N. on Us and AWARE and the NAA and they all have forms that you can download. First of all, you need to protect your child today. So you need to go take those forms to your neighbors. And you need to have what I would suggest to every parent is in your glove box, by your phone and at your office at work is have a list of all the nearby houses, so that when you do have that terrified moment and you call 911, you can just ramble them off without even having to think about it. You’ll forget things when you’re in that panicked moment.

We have a website. It’s called themasonallenmedlamfoundation.webs.com and there is an actual place where you can fill out a form for the Mason Alert, and we’re collecting signatures and we plan on taking them to Congress. The great thing about this is it’s been 92 days since we lost Mason and we’ve already saw the shift in awareness. People are saddened by the loss of Mason and they’re starting to realize that there are even more children than Mason that have been lost. Since Mason’s died, nine other children have died, and out of those nine eight have drowned. As autistic parents, our child is twice as likely to drown as a normal child, so that’s something everybody needs to be aware of. You need to go and fill out the form.

If you can’t be an advocate, at least be a participant. Everybody has a [unknown]: participate in it. Also write letters to your local police department. Tell them: “My child is special; you don’t understand.” Explain autism to them. Invite them to come and spend an hour with your child.

Tricia Kenney: Something I don’t think a lot of people realize why this drowning is such an issue. I witnessed pretty early on—I think my children were about four years old and I took them to the YMCA. We were in the shallow end of the pool and I was going to try and give them swimming lessons. I’m working with my one son, and my other son starts walking towards where it gets a little deeper. I’m watching him to see how he’s doing, and he just keps walking and the water starts coming up to his mouth to where he can’t really keep above it anymore. Instead of backing up or turning around to go back to where it was more shallow, he just kept walking.

Sheila Stark Medlam: Oh.

Tricia Kenney: And I’m like: “My God! He doesn’t have that danger, that—”

Sheila Stark Medlam: Awareness.

Tricia Kenney: “That sort of instinct to survive to where you don’t keep walking where you can’t breathe to back up or turn around.” And I’m like: “Oh, my God! If he were ever to wander into a pond or anywhere else like that where it got deep enough, he would not know to turn around; he would not stop and back up.” And I think a lot of people don’t realize that that’s how this happens to our kids, that they just don’t have that ability to realize that we don’t keep walking when we’re drowning.

Sheila Stark Medlam: Right. Also, people just don’t understand the complete lack of fear. Mason had absolutely [no fear?] of anything. He would climb as high as he could climb; he would jump off of things that scared the living daylights out of me, and he’d laugh the whole time he was doing it. He was so joyful in doing it. I can guarantee…

[Silence]

Tricia Kenney: Hello?

Sharon daVanport: I think that her call was dropped. She’ll call back in. It looks like their call went off the switchboard.

Tricia Kenney: Oh, okay.

Sharon daVanport: So she’ll call back in. But I wanted to acknowledge really, really quick that L.E.A.N. on Us is over in the chat room, while we’re waiting for Sheila to call back in. Like I mentioned earlier over in the chat room, they’re giving some really, really good links. First of all, one link that they posted is about A Child is Missing It’s a free system that uses a recorded message specific to the individual that has wandered that goes out to assist residences with the area that the individual is missing in. So that’s a pretty good system, yeah.

Tricia Kenney: I’ve seen a story that used that system. What it does is it calls your neighbors and the people in your neighborhood.k

Sharon daVanport: Oh, how nice.

Tricia Kenney: Yeah. It’s a phone call; it wakes everybody up if it’s 2:00 in the morning. [Chuckles] But it calls all your neighbors and gives them a recording that that person is missing and they can immediately join in in assisting in a search. So it’s a really neat program, too. That’s another thing that I think is really important: getting your neighbors involved. Introduce them to your child; make sure they know what your child looks like. Explain to them: “If you ever see my child out there without me or an adult, by themselves, they’re not supposed to be. Grab onto them and bring them home. Stop them from where they’re about to run to or whatever, but you have to jump in their way to protect them. They are never supposed to be just out there on their own.”

Sharon daVanport: Right.

Tricia Kenney: I think if you inform your neighbors out that, they’ll keep an eye out. I know my neighbors all know who my son is. [Chuckles] They’ve seen the issue. They’ve seen us chase him down the road, [Laughter] running after him, calling for him and all that, and have assisted us in catching him to bring him back home and all that. So I think it’s really important to get your local community involved, and the police here all know my son as well. [Chuckles] They’ve dealt with him so many times, with his taking off.

But we’re pretty lucky in that respect, because when I called them [unknown] and said: “Go to the train tracks; please, go to the train tracks; you have to go to the train tracks,” that’s immediately where they went, and they got him.

Sharon daVanport: Right. I think that there’s somebody coming on the switchboard and they’ll be over there, and I think it’s Sheila. But go ahead and finish. I remember this incident about the railroad tracks.

Tricia Kenney: We were very fortunate, because the police did find him on the railroad tracks. They stopped the train right away, which was very nice of them. And then they went there and they found him, and that’s exactly where he was: two miles away, on the train tracks.

Sharon daVanport: But I remember that, Tricia. I remember you saying that you were really worried that they weren’t taking you seriously at first, kind of like what Sheila was saying. They kept thinking: “There’s no way that this little seven year old has made it two miles to the railroad tracks. Why the railroad tracks?” They just didn’t understand that fixation, kind of like what Sheila was saying with her little one, with Mason and the pond.

That needs to be something that’s taken seriously by first responders, that you knew exactly to tell them: “I know he’s at the railroad tracks; I don’t care that it’s two miles away. You will find my son at the railroad tracks,” and thank goodness they listened to you and they stopped the train from coming. They stopped the train, and the track was exactly where they found him. Head to toe, he was covered in black coal. He was on those railroad tracks. Oh, my goodness. It’s just like Sheila was saying. You have to work with first responders to understand that we know our children’s fixations and we know where they want to go. And that’s where they should look right away. I’m going to go over to the switchboard. I believe we’ve finally got Sheila back.

Sheila Stark Medlam: Yes, I am back. I don’t know what point I lost you.

[Laughter]

Sharon daVanport: Oh, well we were actually sharing a link from over in the chat room that L.E.A.N. on Us had posted about A Child is Missing. We were talking a little bit about that.

Sheila Stark Medlam: That is a wonderful program; it really is. That makes thousands of phone calls in a minute to alert people that your child is missing. It’s another layer of protection. Is it the answer to everything? No, it’s not. It has to be layered protection. Layers and layers.

Tricia Kenney: It’s another weapon in your arsenal. [Chuckles]

Sheila Stark Medlam: Absolutely; absolutely.

Sharon daVanport: Sheila, what is the next step in what you guys are doing to make the Mason Alert a reality?

Sheila Stark Medlam: Well, the next step would be to go to Pensacola and actually meet with Officer Jim Donohoe and get this implemented, and then just push it and push it and push it and make people aware that it’s available to them if their police department requests it. There are other programs out there, and I don’t know much about all of the programs. I’ve been in this for 92 days, but we have to get something in place and it has to be right now. We’re jsut absolutely grateful that the Take Me Home program is willing to work with us, and to change the way that they ask questions, so that it’s more focused on our children when they wander.

The next step after that would be to just push it and push it and push it and make Washington aware that we demand this for our children. We demand that it be in every single police department across the country, and we also demand an alert—an actual alert for our children. We will not settle for anything less, so that is what is next for us.

Tricia Kenney: Right. Too many children are being lost, and it’s not necessary. It’s easy to remedy the situation.

Sheila Stark Medlam: Absolutely. And inexpensive. In Washington, what I notices was there’s a budget, and everybody wants a piece of that budget. They’re all afraid that they’re…I don’t even know how to describe it. It’s a politics game; it really is, and I have no patience for politics. My child died, and there is no reason for him to have died. This has been an ongoing issue. The government has been fully aware of it for many, many years. Why weren’t those changes implemented before my son ever wandered?

It’s very sad that we had to go down this list and get to Mason, because I can tell you that hundreds and hundreds of children were lost before Mason, and more than enough were lost after Mason. It makes me mad. Every story makes me mad; it makes me cry. I write to these parents and I try to support them. I tell them: “I understand what you’re going through and you’re a part of this as much as we are.” They are all a part of it; they’ve all lost something precious that can never be replaced. People with the living children, we’re fighting for you. So you have to find your voice, too. Don’t wait until it’s too late to find your voice.

That’s my biggest point to make, is you have to have a voice for your child, because your child has no voice. Our mission statement, I guess you would say, is that we stand witness for those that are lost. We advocate for those that live, and we are the voice for those with no voice. And that’s how we feel about ourselves. We feel like we’re fighting for all of these kids that cannot fight for themselves.

Tricia Kenney: Right. And I think budget issues are huge within law enforcement and cities that are trying to keep their head above water, although I don’t know of many that actually have their head above water. Everybody’s in the red, right?

Sheila Stark Medlam: Right.

Tricia Kenney: Yes. I think it’s very important that this is free program for them to integrate, for those that do have a 911 database. I know not every city does, not every town does, especially out in the boondocks, way out in the country.

Sheila Stark Medlam: Normally, [it’ll roll over?] to a larger county that has a 911. So for instance, we live in a town that does not have 911, but it rolled over to Sedgewick County, which is a bigger city that is just a few miles from us. So the 911 calls came through Sedgewick County. These programs, still these police officers would instantly have the information that they needed to save Mason’s life.

Tricia Kenney: Exactly. And for other programs that do cost money, like Project Lifesaver, I know here in St. Louis, that was a no-go. I tried calling about that several times, because I thought: “Well, at least we can do this if the police departments will just be on board with it.” But they weren’t. It costs money and they weren’t willing to do that.

Sheila Stark Medlam: And how ridiculous is that? How ridiculous is that? What they don’t realize is it costs probably a lot more to actually go and put on these massive searches for these children than it ever would to implement a program like Project Lifesaver.

Tricia Kenney: Exactly.

Sheila Stark Medlam: I know when Mason went missing, they had police, firefighters, EMS, the helicopters, everything. I’m sure that was not an inexpensive search, even though it only lasted for 17 minutes.

Tricia Kenney: Exactly. I’m sure it cost thousands of dollars.

Sheila Stark Medlam: And some searches last for days.

Tricia Kenney: Umhm. Or look at Nadia Bloom.

Sheila Stark Medlam: Nadia Bloom.

Tricia Kenney: All those days searching the swamp with dogs and helicopters and search teams. If she’d just had that LifePROTEKT watch on or if she had a Project Lifesaver band on or something, it could’ve been minutes instead of days. I can’t even imagine how much it cost for that massive search for five days.

Sheila Stark Medlam: Probably a lot more than what it would’ve cost to implement either of those programs.

Tricia Kenney: Umhm. And what’s really disturbing is that none of these organizations have a scholarship or funding for families where we can go and say: “Okay. My child is a wanderer. How do I get a device to help protect them?” And none of them have funding to give you for that.

Sheila Stark Medlam: Absolutely. I totally agree with you, and that’s where our frustration is coming in. We see all of these great things that are available for our children, but unfortunately, most of them are out of reach for parents that are already struggling with the emotional and financial burdens of raising disabled children. The only word for it is “disgusting,” I guess, probably is the only word that I can think of. It’s disgusting that there are things out there that can keep our children alive, but we just cannot reach them.

Tricia Kenney: And that’s what’s really hard for parents to have to swallow. When you know that your child could take off at any second and you know that there’s a way to protect them, but it’s out of your reach.

Sheila Stark Medlam: And that’s why you can thank God for programs like LifePROTEKT that offer at least something for free to the people in the most desperate need. You have to be grateful for that. I know Lou personally, nd I can guarantee you that he wishes he could strap one of his devices on every single child that has the propensity to wander. But unfortunately, they’re just expensive and so we have to get the medical code and we have to make our insurance companies able to pay for these devices, so that they’re available to families.

Tricia Kenney: Yeah.

Sheila Stark Medlam: That’s also a huge issue, I think.

Tricia Kenney: Yeah. I know they’re working very, very hard on the insurance coverage, and what a blessing that will be to so many families. I know that would save lives. It’s so crucial and it just boggles your mind. Why can’t we do this now? Why can’t we already have this?

Sheila Stark Medlam: You can put GPS tracking devices in your dog, but you can’t do the same for your child. It baffles the mind, when you actually start to think about how little protection is surrounding your child, that is probably the most vulnerable of all citizens.

Tricia Kenney: Exactly.

Sheila Stark Medlam: They’re absolutely the most vulnerable and the most loving and beautiful of all of our citizens and they have no protections. So we’re fighting for that; we’re fighting for it.

Sharon daVanport: Right. Sheila, do you mind if we went over to the switchboard? I see that we have someone who called in. Okay, I’m going to go over to the switchboard. It’s going to be for [area code]. You’re on the air.

[silence]

Hello?

Sheila Stark Medlam: Maybe not.

Sharon daVanport: Okay. They’re probably calling in just to listen to the show. We have people who call in and listen through our switchboard, but they have to press either 1 or 2: one is to listen, one is to speak to the hosts. So we do have listeners who call in through the switchboard, so they’re still with us. They’re still on the switchboard, so I think that perhaps they’re actually just wanting to listen through the switchboard.

Okay. One thing I also wanted to make sure that we covered today, Sheila, while you’re on the show with us, is: you explain the way that [the Mason Alert] is different than an Amber Alert, and you also stress the importance of making for sure that within this database, when a child wanders and goes missing, that it’s important for there to be specific things that are allowed to be noted in there for first responders to take note of.

Sheila Stark Medlam: Correct.

Sharon daVanport: What are some of the things that you feel are vital? That you know for sure that they need to be in there?

Sheila Stark Medlam: Well, the two main points that I feel [about] the registry that I’m going to actually provide police with are the nearby hazards, because nobody knows what’s around your home better than you do, and also what your child’s fascinations are. For instance, Tricia, her son is attracted to railroad tracks. My sister’s son is exactly the same; he draws railroad crossing signs on everything: their walls, their doors, every piece of paper. He’s actually been five miles down the railroad tracks, and if a train would’ve come, do you think he would’ve ever gotten out of the way for that train? No; he would’ve just been thrilled it was coming down the tracks.

Tricia Kenney: Umhm.

Sheila Stark Medlam: I think just being able to note what their fascinations are is essential, because each of our children is different and they’re pulled towards something. I’ve talked to parents who have children who are fascinated by spinning wheels. They would love to be out in the middle of the street, standing in the center of traffic watching the wheels go around. Lori from AWARE and the NAA, her child is fascinated by road signs. It doesn’t matter to him where they’re at. If they’re in a dangerous part of the road, he or she—I’m not sure if she has a son or daughter, but I’m fairly certain it’s a son—wants to just get to the sign. So it doesn’t matter if he has to walk through four lanes of traffic to get there. So noting their fascinations and the nearby hazards are essential to providing first responders with the information they need.

Sharon daVanport: Right.

Tricia Kenney: How soon can we start doing this? How soon can we contact our law enforcement agency?

Sheila Stark Medlam: Well, I would say contact your law enforcement agencies now. Tell them that you want this program now, because by the time they get it, these questions will be integrated into it. I don’t think it’s going to take that long to do. I really don’t.

Tricia Kenney: Do we tell them it’s the Mason Alert system? Or do we tell them it’s the—?

Sheila Stark Medlam: Mason Alert Take Me Home program is what we’re calling it. It’s just essential that parents realize this is a registry, so we still have another step to take, which is to get an actual alert system. When you ask what the difference is between an actual alert for our children and the Amber Alert, you need to understand what the criteria for an Amber Alert being issued are. That criteria is your child has to be abducted. They have to have a description of the abductor or the abductor’s vehicle, and your child has to be in imminent danger of being hurt or death.

So our children, although we believe firmly that it’s as urgent as a kidnapping, our children don’t fall under that criteria, because they haven’t been abducted. They wandered off. You need to understand, a lot of parents think the second their child goes missing that the Amber Alert goes into place, and it does not. It does not.

Tricia Kenney: Right.

Sharon daVanport: Right. And what is the website—?

Sheila Stark Medlam: You have to be under 18 in order for that to go into effect, also, just to point that out.

Sharon daVanport: Right. And, Sheila, what is the website? Is that the Mason Allen Medlam Foundation?

Sheila Stark Medlam: MasonAllenMedlam.webs.com, yes.

Sharon daVanport: Oh, okay. I would encourage everyone to go over there and check out the site.

Sheila Stark Medlam: We do have a Facebook page that is the Mason Alert page, and we keep a lot of [unknown] presentations and what we’ve done on that page, just because a lot more people probably access Facebook than they do anything else. [Crosstalk] It’s Mason Alert on Facebook, yes, and anybody can go there.

It’s completely open to the public, and we’re very open people. If you go to my website, my phone number, my name, my address, it’s all listed there. I have nothing to hide from the world; I want to help everybody, and so if there’s anything I can do for anybody, I just want to do it. I want to keep their children alive.

Tricia Kenney: Right. So there’s very important information here for parents. First of all, you can go to the Mason Foundation page; you can also go to A Child is Missing.org. You can go to L.E.A.N. on Us.org and help them to train first responders in your area, and make them aware of autism issues and what could happen. But, yeah, this registry is very important, and especially since it doesn’t limit an age. I know plenty of people with adult children living at home who go through the same thing, and it’s a little bit harder to keep a 20-year old in the home.

Sheila Stark Medlam: Exactly. I just had a letter from a women who, last year, her 18-year-old son was the one that was found in the river, and I haven’t wrote her back. It really literally sometimes takes me a week to write back to these parents who’ve had children that have drowned, because every time I read their stories, it’s like reliving Mason’s death all over again. I feel such a connection to them that I want my letters back to them to be absolutely perfect. So her son was 18, and he got in a conflict at a concert and was so distraught. I still think that there must’ve been some other circumstances, because somehow he ended up at the river and was drowned and they found him two days later.

Tricia Kenney: Right.

Sheila Stark Medlam: And this woman is still devastated by his death, and his name was Mason also. That devastation just does not go away, and it doesn’t matter if your child is five or 18 or 45. You don’t want them to die. You just don’t.

Tricia Kenney: Right. Right.

Sheila Stark Medlam: These two are essential, and they should’ve been put into place a long time ago, but they weren’t. So we go on with that. If we could undo the past, Mason would be here today. Since we can’t, we go forward and we fight.

Sharon daVanport: Well, Sheila, in closing I wanted to ask you…We’ve only got a couple minutes left, but I wanted to give you this opportunity to…This is your time in closing out the show to say anything you would like to say: maybe something that we didn’t cover, some information, anything about Mason, your family. Just anything you’d like to share. We’d like for you to close out the show.

Sheila Stark Medlam: I think we’ve covered all the essential bases. I would just urge all parents to research what’s available in their community. I do want to tell everyone a little bit about my son. He was very beautiful, very loving [crying], and he was miracle to us. There was never one day where we wished for a different son. Every day without him is very, very hard, and so don’t let your child be lost. Just don’t. If there’s anything that we can do to help you, we will do it. We don’t want you to lose your child. It’s the most traumatic thing that could ever happen.

I have a seven-year-old daughter and I went to her school. She had drawn a picture of her happiest day, which was her holding hands with her brother, and her saddest day, which is her standing beside his coffin, crying. If you don’t think that that destroys you, it does. We’re here for your families, and we hope and pray that all of your children are safe. That’s all I have.

Sharon daVanport: Well, thank you, Sheila. That was really brave and courageous of you to take this time, while you’re still grieving. Of course, I know you will all your life. No one ever gets over the loss of a child, I’ve been told. So I want to thank you for taking the time, and all of us today and our listeners thank you for taking the time that you have today to be with us and share this important information. We’ll be in touch, as well.

Sheila Stark Medlam: Thank you so much, and I appreciate you letting me be on your show. You guys have a great day.

Tricia Kenney: Thank you, Sheila.

Sheila Stark Medlam: Bye.

Tricia Kenney: Bye-bye.

Sharon daVanport: Bye-bye.

[Sheila hangs up].

Okay. All right, Tricia, are you okay?

Tricia Kenney: [sighing] Yeah.

Sharon daVanport: That was a pretty hard program to get through, and I just want to mention to everyone that when you hear stories like Sheila’s, it’s just so important to realize that this is going on every day. It’s not just something that happens only to other people. In our community, these are the kinds of things that it’s touching all of us in some way. It can happen to so many people. Like she said, it’s not even just in the autism community, so I encourage everyone to get over and check out these websites that we mentioned on the show today and support them. Do what you can to make sure that you can have these programs in your community.

Tricia Kenney: Yeah, I agree. Do everything that you can while you can.

Sharon daVanport: Right. I want to thank everyone for joining us today on AWN radio. Again, we are the Autism Women’s Network on Blogtalk.

Tricia Kenney: I just wanted to say a big thank you to L.E.A.N. on Us for being with us during the show and giving us so much crucial information in the chat room during the program today.

Sharon daVanport: Okay. Very good. Well, and we also wanted to mention and give a big thank you, again, to LifePROTEKT for being our sponsor here on AWN Radio for the GPS location device. Congratulations again to the family for Isabella winning the drawing this month. Until next week, we’re going to say goodbye from all of us here at AWN radio, and have a wonderful weekend. Goodbye.

[End]

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s