Interview with advocate Sheila Medlam on her son Mason and autism wandering

On July 27, 2010, 5-year old Mason Medlam, a non-verbal boy with autism, wandered from his home in Colwich, Kansas and drowned in a pond despite numerous safety precautions.

Mason was one of at least nine children with autism in the U.S. who died after wandering in 2010, all from drowning. So far in 2011, three children with autism in the U.S. have drowned after wandering. On March 30, a child with autism in Victoria, Australia died after being struck by a train. On April 3, a child with autism in Quebec, Canada went missing after wandering and has not been found.

In the eight months since her son Mason’s death, Sheila Medlam has been raising awareness of autism wandering. She has established the Mason Allen Medlam Foundation for Autism Safety and collected more than 100,000 signatures to propose a “Mason Alert” program. The Mason Alert would consist of an alert that would be triggered when a child with autism goes missing, and a registry of children with autism and other disabilities at risk for wandering.

Medlam told her story to the federal Interagency Autism Coordinating Committee last October. After that meeting, the IACC formed a safety subcommittee and asked Health and Human Services Secretary Kathleen Sebelius in a letter to investigate wandering prevention programs and best practices.

At the IACC meeting on April 11, wandering prevention measures were again discussed. Public support for proposed safety measures, including establishing a medical diagnostic code for wandering, came from the National Autism Association as well as law enforcement personnel.

In an interview with Examiner.com, Medlam talked about the life of her son Mason, the joy he brought her and her family, his tragic death, and efforts to raise awareness to prevent future wandering fatalities.

What was Mason like as a baby?

Mason was a wonderful baby. He was always very focused, even when he was only a few weeks old. He had a glorious smile and laughed like the Pillsbury Dough Boy when you would tickle him. He fought for every milestone that he achieved. When he was about a year old he was diagnosed as autistic. A few weeks later, he had his first MRI and it showed that he had severe, diffuse brain damage.

At first, the doctors told us that he had Metachromatic leukodystrophy along with autism. We were devastated. That diagnosis meant that our son would die a horrible death by the age of five. We had him tested for the disease and waited eight weeks for the results. During the time when we were waiting for the results, all we could do was cry and grieve. We couldn't bear the thought that we would lose him at such a young age.

When they told us he didn't have Metachromatic leukodystrophy, it was such an incredible relief. They could never explain what had caused the brain damage and autism, but we didn't care. We were just so grateful that we would have him with us, no matter what his disability. In the end, we still lost him when he turned five. I can't describe to you how cruel it seems fate was.

What was your reaction when you were told Mason was diagnosed with autism?

At first, it was like a death had happened. When your child is born, you just automatically have dreams and hopes for your baby. Their first bike ride, the first day of school, playing football, going to prom, getting married, having children. It is almost like that dream child dies and a new one is born, because you have to adjust your vision of your child's future.

At first, I was devastated, but as Mason's personality developed, I fell in love with the child that he was, and was so grateful that he was so much more than that dream child. He was just so full of love and joy that you couldn't help but love who he was. He was so fascinating to watch, and he loved with everything that he was. I became so thankful that he would be with me forever. I remember thanking God for giving me this wonderful boy that would live with me for his whole life.

When did you go from devastated by the diagnosis to accepting him as he was?

It happened gradually. I went from sad to happy so slowly that I can't tell you what day it happened on. I know it happened because of who Mason was. He never grew frustrated by obstacles, he just found ways to overcome them. He just looked at the world so differently from anyone else I have ever known.

What was it like when Mason learned to walk? What problems did he have that made him have to use a walker?

Early in life, Mason met his milestones much more slowly than other children. He didn't roll over until he was close to a year old, he never said a word or made sounds until close to the time he died. He didn't walk until he was almost three. At the time, Rainbows United was helping him with physical therapy and one day they put him on a treadmill in a harness. They turned it on, and moved his feet slowly. You could literally see the second he figured out how to walk. It just clicked in his eyes. A few days later, he was walking, and then he was running and never stopped.

Did he have any favorite stuffed animals or puppets?

Mason always loved stuffed animals. He was always carrying a bear, or Ducky – a big, stuffed yellow duck. He also adored figurines. He had tons of SpongeBob and Patrick toys. He died with SpongeBob on one side of him and Ducky and Yellow Bear on the other. I hold those toys often and close my eyes and pretend it is him in my arms. I miss him every day. I miss the sound of his laugh, the feel of his skin and hair, the weight of his body as he would fall asleep in my arms. I ache for him.

What were his favorite toys or games to play?

He loved to sit on my lap and have me count to five over and over again. He would hold his fingers up one at a time and I would count them. He also loved patty cake, loved to be tickled and spun around, and loved it when you chased him and loved to bounce his big blue ball off of the sliding glass door and catch it over and over again. He also loved to run. He would just run around the couch or kitchen island in circles and laugh and giggle. He would drive his crazy coupe car that he got for Christmas around and around in circles and wave at himself every time he passed the glass door, and he loved toothbrushes and toothpaste. We would have to hide the toothpaste all the time or he would eat half of it and smear the other half over anything around him.

What did he play with his sister?

They often watched cartoons and SpongeBob together, would swim in the baby pool or drive around in Lizzy's car outside. It was hilarious because he would always fall asleep when she drove him around in that kid's car, but never fell asleep when I drove him around in my car.

Did Mason enjoy your dogs and other animals outside the house? Did he like riding horses?

He would basically ignore the dogs, but he absolutely loved the chickens and the horses. He always wanted to get into the chicken coop or climb the fence into the pasture with the horses.

Was he interested in art?

Yes. I will never erase the scribbles from the walls and occasionally, I still find a new place where he colored and I just start crying.

Did Mason like preschool? What was he learning?

He loved school and was in special ed preschool for two years. He would bring me his book bag and shoes and try to get me to put them on him so he could go, no matter what day it was or what time. We were so excited about this year because he was going to learn to talk with a picture book. He died two weeks before kindergarten started.

Did he have a good sense of humor?

God, yes. I miss his laugh so much. He saw the “funny” in everything.

Was Mason mostly happy? Were there times he cried a lot?

Mason rarely cried. The only times I ever saw him sad were when SpongeBob was sad on TV. If SpongeBob cried, Mason cried.

Did he have any troubling behaviors?

He wandered and had no fear at all. Nothing scared him. Nothing. He would climb anything and just jump. He never understood that he could be hurt, and somehow, he never was until the day he died.

Did Mason have any verbal ability at all? Was he learning to point to things at school? How frustrating was it not to be able to hear him speak?

Mason had no verbal skills at all, but you always new what he wanted. He was very expressive and could just convey things to you. He would take you by the hand and take you to whatever he wanted. The only word I ever wished I would have heard from him is “Mama,” but he said it in so many other ways.

Were there things he couldn’t do that made it really hard?

There was nothing he couldn't do except speak. He overcame every obstacle that life put in front of him. He was the strongest, bravest, most determined person I have ever known.

Besides what you’ve already covered, are there any other favorite memories you have of Mason?

The quiet times when it was just him and me are my most precious memories. We were both night owls and would stay up late. He would sit on the arm of the chair that I sat in. I would read and he would watch one of his favorite shows and we would just rock. Then he would lay his head on my shoulder and fall asleep and I would just hold him and think how lucky I was. I would just smile and hold him and rock.

What security measures did you have and which ones did he figure out?

We had five locks on every door. He figured them all out, even the double key locks. We had to hide the key just to keep him inside.

How is the rest of the family taking the loss of Mason? What do you tell your 7-year old daughter?

We all miss him. Some days are easier than others, but none are easy completely.

I told my youngest daughter that her brother is in heaven and someday we will see him again. We couldn't bear to have Mason put in the ground alone, so we brought his ashes home. His coffin was white and Lizzy asked me over and over for two weeks to please, please go get Bubby out of the white box and bring him home. At school, she had a project where she had to draw a picture of her best day and her worst.

For her best day, she drew herself, smiling, holding Mason's hand. For her worst, she drew herself crying, standing beside her brother's coffin. It took a long time for the nightmares to go away, but we are all still sad. We all still cry.

I don't know that there is a way to make a 7-year old understand what death is. I am not sure if there is a way to explain to a child our hopes that there is another kind of life beyond this one, but we have tried.

What has it been like for you since Mason has been gone?

I want to die. I want to be with my son. I want to follow where he has gone. I am only here because my daughter is still here. I want my son back. I cannot bear the thought of living one year, five years, 50 years without him. He was the other half of my heart and soul and I cannot comprehend how the pain will ever diminish without him. I fall asleep with the memory of his face with blue mouth and lips after I pulled him from the water, and I wake up with the same memories. I am broken beyond repair without him and can only hope that somehow I find the strength to survive long enough to honor my son and see my daughter grown and healthy. I no longer fear death. Instead, I wait for that day so that I can be reunited with Mason, my love, my son.

Do you have any advice for parents who have lost a child?

Make small goals for yourself or you won't survive. Find a way to say your child's name every day. And know that you aren't alone.

What do you want Mason’s legacy to be?

I want the world to know Mason's name, his face and what we lost the day he died. I want the world to know how to keep these children safe. I want other children like my son to live long, beautiful lives. I don't want anyone else to lose a child like Mason. He was the best of what I was and his loss is enormous.

I want the world to change. It is time for us all to accept that there are people in the world who are just more than the rest of us. We look at these people and sometimes see less, but the truth is, they are more than what we are. They love with their whole hearts, they move through life with no fear and no despair. They see love and joy where we see pain and sorrow. These are the most precious part of our society and they need to be sheltered, nurtured and protected no matter what the cost.

Is there anything else you want to say?

Mason, I love you and miss you. There isn't a day that goes by that I don't cry for you. I would give anything to have you back.

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