kids 2009 019

In the last week, we have lost three beautiful children to autism and wandering. Two-year-old Drew Howell wandered from his families cottage and drowned in a nearby river. He was found immediately, but it was too late to save him. Eight-year-old Owen Black wandered from his mother’s holiday condo and was found two days later, drowned in a nearby body of water. Nine-year-old Mikaela Lynch wandered from her families vacation home and drowned in a nearby creek. Unfortunately these children are not the first to lose their lives in this manner, nor will they be the last.

I became acquainted with the horrors of autism and wandering nearly three years ago when my five-year -old autistic son, Mason Allen Medlam, wandered from our home, drowned in a neighbor’s pond and died two days later.

When Mason was born, we just didn’t know how he would change our lives. He was a sweet, loving baby, with a wobbly head and no muscle tone. We grew concerned for him almost immediately, because he just seemed so fragile. At six months old, we took him to a neurologist and received the diagnosis that would change our lives in so many unexpected ways. Mason was autistic.

At the time of Mason’s diagnosis, I had a vague idea of what Autism was. I’d seen rain man and I had a nephew who was severely autistic. I lived quite a distance from my sister, Karen and didn’t visit often. I just knew her son was different than normal. He was delayed, and fascinating and the whole idea of being responsible for a child with this disease scared me beyond all reasoning.

In the beginning, life was full of frustration. No one could tell us why Mason was Autistic. No one could tell us if he would be able to sit up on his own, walk on his own, or talk on his own. There just seemed to be this black hole of information. All the preconceived notions we’d had about our baby boy growing up and becoming a doctor or the president, or just becoming a typical young man seemed to go down that hole. It was almost as though one child had died and been replaced by another. That may sound dramatic, but as soon as you get a diagnosis like we did, you have to rearrange the life plans that you had for your child. Every thing changes and you are left in limbo, just waiting for each milestone to be met.

The first three years of Mason’s life were our “easy and fun” years. Because Mason wasn’t very mobile, he was easy to watch. It took a long time for Mason to learn to crawl, but when he did, man he was fast. Then around three years of age, he took his first steps on a treadmill and from the second he realized he could walk, he ran.

Prior to him learning to walk, Mason had no real interest in being outside. He crawled on his hands and feet and just couldn’t stand the touch of grass on his hands. Once he began to walk though, he craved sunshine. The only thing that gave him more pleasure than being outside was water. He would play in the toilet, the sink, the bathtub, the dog’s water bowl, the garden hose, the baby pool. Water brought him joy. He would laugh and laugh as he played. He would laugh before he even got to the water, just because he knew what was waiting for him. He was trouble on two legs, and he was fast.

We moved to the country two years ago, and Mason got his first taste of real freedom. We have a huge yard, chickens and horses, just lots and lots of room to run and play and he loved it. At first the only precautions we took were locking the door with the regular locks, but he quickly figured those out, so we added hotel latches to the top of every door. Within a month he had figured out how to unlatch those with a long stick, a chair, or a broom. We added double key locks to every door.

Most people think Autism is this debilitating disease that robs the child who is diagnosed with it of everything that a normal child can do.

I look at Autism as a disorder that trapped my brilliant little boy inside his head. Although he couldn’t express himself with words, that wonderful mind never, ever stopped working and he had the problem solving skills of a rocket scientist. If he wanted something , he figured out how to get it. He would literally watch, without you realizing it, and if one person forgot to close the door all the way, or latch the latch, he was out the door in a blink of an eye.

Every fifteen minutes, I would ask, “Where’s Mason?” I was hyper vigilant with him. I knew he had absolutely no concept of danger. I knew he was a runner, and I knew he would be attracted to the most awful of dangers if we didn’t always know where he was.

During the five years that I had my son, I never slept more than a foot from him. Never. I was terrified that he would wake up in the night and some how find a way out of the house and be lost to me forever. I couldn’t take him to a babysitters house because there weren’t any that had taken the precautions we had. How can you explain to a daycare that the standard locks they have are not Mason proof. How many child care providers are willing to add multiple locks to their doors and take on such a risk as a child who wanders at the first opportunity? From personal experience, I can tell you none that I know of.

On July 26th when the temperature reached 105 degrees our air conditioner stopped working. Our land lord came to our home and said he would be able to fix it in a couple days. I went to the store and bought a few fans.

My youngest daughter, Mason and I slept in the sun room, which has a window unit in it, and I put a fan in my oldest daughter, Megan’s window. I sat the fan on the sill and closed the window halfway over it. I fell asleep that night holding Mason’s little hand.

The next morning I got up and thought about staying home. I was worried it would be to hot for the kids, but I decided to go for the morning and come home around noon. I woke Megan up so she could watch the kids and left for work.

At ten thirty I got a phone call that would eventually destroy my life. My youngest daughter called and said that they couldn’t find Mason. I rushed from work, dialing 911 as I raced to my car. I knew then that it was going to be bad.

A year before, when we didn’t think Mason knew how to unlock the doors, we had been in one room uploading pictures from a party we’d had. The next thing I knew, my husband was racing out of the house after Mason. There is a retention pond across our street with a large windmill. Mason had never been there before in his life, but I think the windmill attracted him, and then he saw the pond. Kenny had pulled him out when he was chest deep in the water.

From that moment on, we’d lived in fear of that pond. Mason never, ever forgot something he wanted.

I knew instantly that Mason had pushed the fan and screen out of my daughter’s window and gone to the pond. I just knew. I begged the police officer I spoke with to go to the pond. I told him he was non verbal and had been there once before, and I called 911 twice to alert them that my son was missing and to find out if they had located him. I work twenty five minutes from home. I drove over a hundred miles an hour, frantically calling every neighbor, every family member, begging everyone to go to the pond. When I turned down the street that we live on, there were police and firefighters everywhere, looking in buildings, walking through fields, yelling Mason’s name, but not one person was at the pond.

I went directly there, got out of my car and looked at the water. The first think I saw was something pink floating in the water. For an instant, I thought it was a piece of paper, but then I knew. I just started screaming Mason’s name over and over as I dove in and pulled him out. I threw him on the bank. His lips and nose were blue and his eyes were closed. I started CPR and all that came out of his mouth was water.

A policeman was about a hundred yards from me. He had drove past the pond and was headed up to a neighbor’s house. He raced over and took over CPR. I ran back to my car screaming, “NO, no, no, no….” I knew then that Mason was gone forever.

They took Mason to the hospital and got his heart beating. For a moment we had hope.. The doctors told us that there wasn’t any, but we refused to give up. We prayed, we asked our community to pray. We just didn’t want to let him go. I told God that if he wanted my son, he would have to come and take him from me. I would not take him off life support. I didn’t care how I got him back, I just wanted him. If that meant caring for him in any state for the rest of his life, that is what I would do. On July 29th, God came for my son. They tried everything to keep his heart beating, but it slowly just stopped. At 7:29 in the morning all the light went out of my life. My son was gone.

Unless you have a special needs child that wanders, I think it is hard for anyone to grasp the relationship that develops between parent and child. Mason was the center of my world. I revolved around his needs and wants. Our household was one big dance all designed to keep him safe. He literally was my joy. He was in my arms or by my side every second that I was home. Unlike a normal, independent child, I was the center of his universe, too. He knew I loved him, and I knew he loved me. It was such a pleasure to watch him dance, or laugh at the wind blowing in his face. I could sit and watch him go round in his car, stopping in front of the glass door each time to wave at himself. He just gave me so much shear pleasure. I couldn’t have and wouldn’t have wanted a better son. He was fabulous. But under all the joy was a constant fear for his safety. I guess since he had no fear, I had a double dose of it. He would climb to the tops of cabinets, leap off dressers and tables, and always was looking for a way out into the bigger world.

The day we lost Mason, a lot of people failed him. I failed him by not seeing the window as an avenue of escape. I should have known that he would be able to figure out how to get into the big, wide world through that small space. I also was so overcome with terror and fear that I was unable to vocalize my fears in a way that would get vital information to those who needed it.

I called so many people in such a small period of time that I lost track of who I had told what. I never told 911 to go to the pond. That would have instantly gone over the radio. Instead I told an officer and assumed it would go out to everyone. I also never mentioned to anyone the fact that there is a large windmill to the pond. We later learned that the officers who did know to look for a pond were unable to locate it because it was overgrown with weeds. If I had just mentioned the damn windmill, they would have gone right there. I will never forgive myself for all the mistakes that I made, and I don’t even have an excuse for making those mistakes. I will tell you that I was in a state of utter terror and despair. I was trembling so hard my hands were bouncing off the steering wheel. I was so desperate for Mason to be safe, and yet I failed to relay important information because I was in the grip of overwhelming panic and terror.

The next group of people to fail Mason were the first responders. They did not know how to search for a child for Autism and they did not take my requests seriously. They assumed that this little guy would be near by. They didn’t think that he would have made it a quarter of a mile to a pond in such a short time. They looked in all the wrong places in all the wrong ways. They were shouting my son’s name. They did not understand that a non verbal autistic child is not going to respond to his name. They didn’t understand that an autistic child is going to be drawn to what fascinates him no matter what is in his path or what danger that fascination poses. They didn’t communicate the right information to each other. The officer I spoke with never went over the radio and told others to go to the pond.

The sad truth is, through my overwhelming terror and panic, I never told the right people the right thing. I called every neighbor and friend that I could speak with and ask them to send someone to the pond. I told the police officer to send someone to the pond, but i never told the dispatcher for 911 to send someone to the pond. Those seventeen minutes from my work to my home were full of terror, fear and confusion. I lost track of what I had told to whom. Also, I failed to give a good description of the area. There is a large windmill by the pond, but I never mentioned that to anyone.

Why, you ask? God, I wish I knew….. if only I could redo that day and just change one thing. But, I can’t. All I can do is stand here before you, a mother who longs for her son, who has a hole in the middle of her chest that will never go away. All I can do is point out the mistakes I made, the mistakes others made, and the lack of resources that claimed my child’s life and ripped him from my arms forever.

Autism is not going to just go away. In fact it is more prevalent today than it has ever been. 1 out of every 88 children is placed on some level of the autism spectrum. 55% of those children wander (although there are higher statistics that quote 92%). The number one cause of death among autistic children is drowning. These children can not adapt to the dangerous environments that are around them. Therefore it is our responsibility to adapt the environments around them to ensure their safety, and the first step to doing that is education.

First responders MUST understand autism. It is imperative for them to have every scrap of information they need to bring these children back to their parents safe and sound. In this day and age, first responders are often on the scene for quite sometime before the parent even arrives. If I had only gotten home five minutes sooner, my son would be alive. If the first responders had only gone to the pond when asked, my son would still be alive. By the time I reached him, he had only been drowned for minutes, but those minutes were enough to rob me of the most important person in my life.

We came up with the idea for the Mason Alert because we know what information would have saved Mason’s Life, and we know what actions would have saved his life. We also know that this information must be collected in a time when the parent is thinking clearly, not when the parent is consumed by fear, worry, despair and terror. We want the Mason Alert to immediately provide authorities with the following:

  • A current picture of the missing person.
  • Missing person’s address and Contact information.
  • Their fascinations: i.e. railroads, small spaces, water
  • Locations of all nearby hazards such as tracks, pools, ponds, abandoned houses, busy intersections.
  • Notify if the missing person is verbal or nonverbal. This is very important, because when we search for someone, we tend to stand in one place and shout the person’s name. A nonverbal missing person won’t respond to this AT ALL. When I arrived home, the police were shouting Mason’s name. I could have been standing right beside him, shouting his name and not gotten a response.
  • How the missing person reacts under stress. i.e. do they hide, do they run, do they fight, do they shut down and just stand still.
  • And finally, how to approach the missing person and who needs to approach the missing person. In some instances, authorities will just have to immediately react if the missing person is in immediate danger, but in other instances, it might be better to wait for a parent or caregiver, and taking this step might help eliminate danger.
  • The Mason Alert would be issued for those who are prone to wandering and do not have the capacity to recognize dangerous situations. The Mason alert would be issued for anyone of any age that has diminished mental capacities and meet the above criteria.

We look at the Mason Alert as a tool in an arsenal of tools that are needed to protect our children. Personal GPS Locators, informed neighbors, informed first responders, informed teachers, proper locks and safety equipment… all of these are essential tools that are absolutely required in order to keep our loved ones safe. It is so unfortunate that we have to search and scramble to gather the things we need to protect our children, and that is what we are hoping to change. I am a mother who lost her child. Why did he die? I wish I could answer that question. I think that it was a combination of tragic errors and misinformation that cost my son his life. Nothing went right that day, and he is gone, so all I can do is try to help others protect their children. I am not a police officer. I am not a doctor. I am not a politician or a scientist who has spent years researching this issue. I am just a mother who lost her son and wants to keep other children alive by arming parents with everything I DID NOT KNOW prior to Mason’s death.

Keep your children alive by researching what programs are available immediately in your areas. Talk to every single person you can to keep them aware of your child’s disability. Keep a detailed list of hazards in your home, near your phone, in your car, at your office. The reason I say this is because there is a large windmill near the pond Mason drowned in, but in that one terrifying moment when I begged everyone go to the pond, I never even thought of the windmill. Details matter in life and death situations, and if they are written down when you are clear headed and thinking properly, you won’t forget them when you are in a panicked situation and reading them off a piece of paper.

How is the Amber Alert different from the Mason Alert?

  • Law enforcement must confirm that an abduction has taken place.
  • The child must be at risk of serious injury or death.
  • There must be sufficient descriptive information of child, captor, or captor’s vehicle to issue an alert The child must be 18 years old or younger.

How is the Silver Alert different from the Mason Alert?

  • Some states limit Silver Alerts to persons over the age of 65, who have been medically diagnosed with Alzheimer’s Disease, dementia or similar mental disability.
  • Other states expand Silver Alert to include all adults with mental or developmental disabilities. In general, the decision to Issue a Silver Alert is made by the law enforcement agency investigating the report of a missing person.
  • Public information in a Silver Alert usually consists of the name and description of the missing person and a description of the missing person’s vehicle and license plate number.

I will tell you this. I spoke to the officer who was a hundred feet from the pond that Mason drowned in and he told me that he has nightmares about my screams. It is not only a tragedy for our family, but it is a horrible burden for those who weren’t able to save my child, and all of us will bear that burden for the rest of our lives.

The next step is technology. We created the Mason Allen Medlam Foundation for Autism Safety to help provide families without resources the latest and best technology to save their child. GPS tracking bracelets are a wonderful tool for parents that can use them, but many children have sensory issues and unfortunately those children will not wear these items.

Safety latches, door and window alarms and key-less or double key locks are an absolute necessity.

There is an old saying, “It takes a village to raise a child.” In the case of autism this couldn’t be more true. As a community, we need to be aware of the dangers to children and adults with autism. The past few weeks have just reinforced the need for awareness and vigilance. The time for change is now. There are 770,000 children on the autism spectrum. There will be more and all of them are in danger when they wander.

There have been over seventy autistic children that have wandered and died since I lost my son. All but two of those children drowned. If you are near water, if your child can get to water in any shape or form, and is autistic, you need to be proactive in your protection efforts. You do not want to share the life that all of these parents and I live now. You do not want to have to live without your child. There is nothing more horrific.

Thank you, Shawna Hinkle, for letting me share this on your blog and encouraging me in so many ways to continue battling.  You are a true warrior for aautism and inspire me in so many ways.

Sheila Medlam