The Mason Alert: Helping Prevent Wandering & Deaths in the Autism Community

I have met an Incredible Mother, Sheila Stark Medlam, who has touched my heart. I wish I had met her under different circumstances, but here we are nonetheless… Sheila not a day goes by that I do not think about you and your son, Mason!!

I always say Autism has blessed my life with fabulous heart centered friends!

… but what if Autism and the Death of Your Child blessed you with friends?

Could you find the blessing within such a tragedy?

Would you find the strength to face another day?

Could you ever echo another laugh?

How would you go on?

How do you go on?

I do not know the answers to these questions. But I do know that by the grace of God, Sheila is turning the tragic drowning of her 5 year old son, Mason, into a much needed safety awareness movement in the autism and special needs community through the MASON ALLEN MEDLAM FOUNDATION.

Sheila told her story to the IACC this week (here at minute 157-168) and advocated for the other 92% of children with autism who wander. Listen to hear Sheila talk with The Autism Women's Network about The Mason Foundation HERE.

You can listen to more statistic and stories here starting at minute 47.

This is why I personally haven't slept in 6 years... My daughter has slept in my bed with one of my hands on her back at all times out of fear of her fleeing into the night despite door locks and chains. Recently, I decided to give her some autonomy; she woke up in the night and removed the screen from her second story window. I thank God nothing tragic happened that night, but I know the risk is always there!

There have been times that she has fleed from the home during the day. She has been found in a tree house naked near a neighbor’s pool, behind houses and trees. Our children do not respond like typical children. Many are non-verbal and do not respond to their name when called. Many are attracted to dangerous situations like water, railroad tracks, streets and animals. … And because these children have an invisible disability they are very vulnerable to predators.

To learn more about some tools to help protect your loved one visit AWAARE… Working to prevent incidents and deaths within the autism community!

In Pensacola, FL the Take Me Home Program was created through the combined efforts of Officer Jimmy Donohoe and the Police department's Software provider. Basically, it is a system designed as a registry that has a photo of theat risk child or adult who is prone to wandering, some basic information about the person, and where they live.

Just 89 Days after Mason’s death, Sheila learned that they would be willing to make changes to the this already FREE program to incorporate the MASON ALERT information including:

A current picture of the child.

Child's address and Contact information.

Their facinations: i.e. railroads, small spaces, water

Locations of all nearby hazards such as tracks, pools, ponds, abandoned houses, busy intersections.

Notify if the child 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 child 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 child 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 child and who needs to approach the child. In some instances, authorities will just have to immediately react if the child 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.

I encourage everyone to contact their local law enforcement to inquire how to implement this program. In the mean time, please sign the MASON ALERT PETITION.

Sheila,

I am deeply sorry for your loss. I will not pretend to know your pain, but I do intimately know the raw fear that took your precious boy. Please know that I am honored that you have found the strength to advocate for my daughter and the other children and adults who wander in our community...

You are right politics should not have prevented someone or some organization or political structure from doing something to prevent Mason's untimely death!! You have an entire community grieving with you and holding your hand as you advocate for our loved ones! My daily prayers are with you, Mason and your entire family!!

Susan

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Lost And Found at the Library

We have worked really hard at trying to integrate our six year old daughter who is diagnosed with Infantile Autism Spectrum Disorder into the community. We have come a long way, but have an even longer way to go.

One of the things I have done to help with this is to take her to the local public library for brief visits. In the beginning, she would run up and down the stacks… I can only recollect once that a staff member got coy with us. However, I believe it was because my older daughter was trying to catch her for me (which could have appeared to be horse play).

Like I said, we have come a long way! Today started off like a typical day for us… We returned our books and movies, and then said 'Hi' to the front desk manager as we headed for the computers in the children’s section. My daughter loves to play Freddie the Fish while I quickly get my reserves (less than 30 seconds). I usually put my stuff on reserve so I don’t have a need to go into the stacks. I then take them over to the computer checkout near the table she is sitting at. This gives her a little autonomy while I am able to get my task done too.

But, today I broke routine... I decided to get a few books that weren’t on reserve. My daughter was sitting quietly on the computer engrossed in her game just like she had in recent visits… I knew I had about 10 minutes before she lost her attention span (or so I thought.) I asked a librarian to help me find a book on pioneers for my other daughter. I was in a stack just 5 aisles over for less than 20 seconds … and she was gone! I even took a double take!! I spun around in a circle and she was no where in sight.

In an instant I decided to go immediately to the front desk, “I can’t find my autistic daughter…. She is 6 years old. I am going to the parking lot to look.” I can’t remember the librarian’s exact response but I am sure it was something like, “I know who she is… Go, we will look inside.” And then I was bolting out the door!!

I ran to the jeep and scanned the entire lot… she wasn't there. I was relieved for a split second, and then more fear filled me. As I ran back towards the library I saw a staff member at the door gesturing to me as if to ask if I found her. When I shook my head ‘no’ she hurried away!

As I reentered the building, I was amazed; every staff member had been notified and they were looking for her in the bathrooms, meeting rooms, stacks, under tables and even around the perimeter of the building. The manager told me to stay by the front door to be sure she didn’t get past us… I told her immediately, “She has on a red Hanna Montana shirt with a purple skirt and has short brown hair”. The next thing I knew I heard my words echoed by 5 people… “She has on a red shirt with a purple skirt and has short brown hair.”

Time was suspended as I watched the staff work together! I found myself thinking about that GPS Locator I got in the mail yesterday… it was still sitting on the charger. (Mental note to self: get that up and running ASAP.) Then my mind wandered to the worse scenario… so I told the manager I was going to go look in the parking lot again. She told me it was best if I stayed where I was at the entrance (the only way in or out of the building).

I took a few deep breaths to center myself and agreed. Then out of the corner of my eye I saw my daughter walking beside a staff member towards me….I ran to her as she looked at me like, “What?”

She had been sitting on the ground safely looking at videos the entire time. After I thanked everyone, my daughter guided me to where the staff member had found her. Apparently, while I was initializing a full fledge search for her, she had been innocently looking for a video to check out. She picked up her video, went to the check out counter, and then walked calmly beside me to the jeep as if nothing happened.

As I sat there for a few minutes, several thoughts came to mind about what I did right…

1) Instead of looking for her by myself, I went and got help. This was difficult to do. My urge was to run through the stacks and start yelling her name. However, when your child is non-responsive verbally this would have done us little good.

2) I gave the staff a description of my child. Due to sensory issues my child changes her clothing daily dozens of times. However, I am always keenly aware of the last change of clothing… just in case!

3) I didn’t panic. Again, when you have a special needs child this is easy to do. When I did begin to have racing thoughts… I remembered to deep breath.

4) I listened to instructions from the manager in charge. This is difficult to do when you are used to be the ‘driver’s seat’ with all aspects of your child. But, by listening to her I knew that one person was in charge and that they were following an obvious protocol.

5) I stayed at the entrance. There was no way she was going in or out of that building with out my knowledge.

(A special thank you to all of the staff at The Columbus Metropolitan Library - Hilliard Branch where I, also, host a monthly Autism Support Group.)

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Autism and Elopement: Finding A Sense of Hope

Wandering

Elopement

Running

Flight Risk

If you have a child on the spectrum these words might elicit strong emotions within you ~ No words can completely grasp the sinking sensation within your being when you cannot locate your non-verbal child!

I hear autism parents chuckle all the time that they are the only ones who lock doors to keep their children inside, instead of intruders out. It is true. If Sahara gets away from me (inside and out) she will not respond to the question, "Sahara, where are you?" We have resorted to chains on doors to give us some peace of mind... that is until she learned how to use the broom to unlatch the locks. She is not only intelligent, but cleaver!!

She has left the house at night once and it was horrifying!! But, it is just as alarming during day light. One time we found her in naked in a tree house near a neighbor's pool. Your stomach falls and panic fills every cell within you. You aren’t sure if you should run in to get the phone to call 911 or if you should start running through the neighborhood. (I have done both!) When your autistic child is non-verbal and out of your sight it is an indescribable experience!

There are horror stories in the news almost daily: Autistic Adult Missing, Austistic Child Found Alive in Swamp, Autistic Resident Found Dead In Van… these are the headlines that keep me up at night (and I mean that very literally)!! This is a constant fear in the recess of my mind and of the mind of many parents with children on the autism spectrum!!

In fact, just before I sat down to write this blog today, I read a news article from Wichita, Kansas where a 5 year old autistic boy was found in a neighbor’s pond, just 30 minutes after his adult sister noticed he was missing. He was in critical condition, but later died. Tragic!! I pray for this family as they go through the unthinkable!

And I pray for all other families that are on the spectrum facing this manifestation of autism!

This is the kind of story I shared with my daughter’s school during our last IEP meeting. I was attempting to make a case for a one on one paraprofessional for safety purposes (in addition to the academic needs). The school is situated near a busy road and there is a pond on the property. The teacher said, “Well, I know you have problems with that at home, but at school she has never tried to run.” Aside the obvious contempt and judgment within her statement, the fact is it only takes once for a tragedy to occur!!

I decided that if the school wasn’t going to cooperate with us, then we would take matters of safety into our own hands. I started researching GPS locators… they weren’t cheap! (Remember, hubby was downsized and we had had no income for 7 months!) So, I called my daughter’s Developmental Disability Case Manager and inquired about funding… she said the family respite services would fund it!! The Caveat…. we would have to forfeit her music therapy allocations for the whole quarter!!

Well, that wasn't a viable option.

At about the same I happened to see a contest posted on facebook via the Autism Women’s Network. They were giving away a GPS locator and one year’s worth of service to an autism family. What could it hurt to try to win this, right? So, I emailed them at info@awn.com to tell them our story.

Our life possibly changed completely via one phone call this morning...!!!

I just sat down with a cup of coffee this morning as the phone rang. Of course, I cannot find the receiver… welcome to the world of tween-dom. The machine picks up and I hear an unfamiliar voice, but immediately recognize the name, Tricia Kenney with the Autism Women’s Network. I sprint to the living room and find the phone on my daughter’s desk… and answer.

I WON THE GPS LOCATOR FOR SAHARA!!

I am not even sure what I said to Tricia this morning. I was stunned. This is a VERY VERY EMPOWERING FOR ME, SAHARA, HER SISTER AND FATHER... THE WHOLE FAMILY!!

As I sat in the lobby of Children's Hospital this morning (Sahara was in thearpy), I thought about all the places and things we could do...

THE ZOO

COSI

FRANKLIN PARK CONSERVATORY

LIBRARY

FAIRS

THE MALL

GROCERY STORES

PLAYING IN THE BACK YARD

TAKING A WALK

PARKS

FRIEND'S HOUSES

SCHOOL FUNCTIONS

VACATIONS

... and the list goes on.

I think about how much we don't do in the community, because of fear of losing her in public! The stress we have between my husband and myself because we are under the constant stress of who is 'watching' Sahara. The sleepless nights because of the fear that she will walk out of the house. The obvious unjust responsibility that her sister burdens. The gut wrenching agony I have when I worry about someone nabbing her.... or worse!!

And as I think about what this simple, yet phenomenal devise will offer us.... I am filled with hope! I am thinking today about how we will be able to teach her better community skills and how we will be able to have more childhood opportunities and fun as these raw fears vanish.

Even the basic ability to be in a different room from her gives me relief... not only for my sanity, but for her personal growth and autonomy. When we were kids we went outside and we learned boundaries, we explored our environment, and we developed real self-regulating skills. Sahara has never had that opportunity... nor has her sister for that matter. Wow!! I am eager to see how this will play out...

Thank you Sharon Da Vanport and Tricia Kenney of AWN!!

Thank you Autism Women's Network!!

Thank you LifePROTEKT!!

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