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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An Autism Halloween Adventure: Beggar's Night, The Lost and Not Found, & Nerds at the ER

I LOVE Halloween… I always have… constructing the costumes, organ themed music, bats and black cats, haunted houses, pumpkin patches and beggar’s night… SCREETCH… BEGGAR’S NIGHT… THAT IS WHERE OUR STORY BEGINS (and hopefully ends)!

This year was just as ordinary, yet profound. Let me explain, about 2 weeks ago Sahara started asking, “Trick or Treat, Yes?” Which is easily translated into, “Can we go Trick or Treating Now?” Up until this moment in time she has shown little to no interest in this particular activity nor has she had the speech to ask for it in advance… all huge milestones. So we created a visual aid to help her count the past 15 days… the excitement was building as we approached Beggar’s Night.

All morning she repeated her daily schedule over and over until she got to the part where she said, “Trick or Treat, Yes?” and would look at me with anticipation to confirm that today was the day! “Yes,” I would excitedly repeat, “after school… pizza… then trick or treat!” And she would smile and say, “Okay!”

[Fast forward… to the main event]

As we were getting ready for the big event, Sahara eagerly helped with her costume assembly… which the girls had helped me for the past 2 months construct… Golden Skirts and Tops with Egyptian Hieroglyphics sewn along the hems, head bands with golden coins dangling across their beautiful foreheads, with white capes… at the last minute we had to add a long sleeve black shirt and hosiery to keep warm. They decorated their already beautiful eyes with thick Egyptian black lines which turned into fancy swirls and golden (yellow) eye shadow.

The girls danced around me and wrapped me with toilet paper and drew even darker circles around my already tired eyes. Daddy threw on all black clothes with a golden sash… okay, that one was lame, but we ran out of time with our “Egyptian Family Theme” and his costume took the brunt of it. (Honestly, I don’t think he minded at all.)

So, it was cold and windy… but we trailed along in awe over the moment of normalcy both children were partaking… I say “both” because although Sahara was fully participating joyfully, cognitively, and with cleverness (she was successfully focused on how many Hershey bars she could capture tonight) … Emily was also indulging in a children’s activity without worry, and domination (which is partly the result of having a special needs sibling… she is always the one to control a situation in a life full of events that she has no control over). Laughter filled our little family bubble!!

Emily exclaims, “Look Mum your family tree!” as she points to a tree that had been toilet papered. Even more laughter…

[Fast forward to the last house]

Emily is chatting and smiling about how Sahara got more candy because she didn’t understand the rules of taking one piece… and I am laughing not only because what she is telling me is true, but because we are having a carefree moment... Then suddenly I hear a faint “CLINK”… I snap my head up and she says, “Your wedding ring!! IT’S GONE!!”

“What!?!?”

“It was on my finger, and now it is gone!”

I stay calm… let’s face it… I am not one of those women who need a ring on herself or ‘her man’ to identify that our hearts belong to each other… we have been through way too much together to have a piece of jewelry define our love, passion and respect for one another. In fact, that is how Emily got the ring. I haven’t worn it in 7 years (he hasn’t worn his since, well, probably our honeymoon 15 years ago). She found it a few weeks ago and thought it looked nice with her Golden Egyptian costume. I told her time and time again not to wear it outside, but to no avail she snuck it on to complete her costume. I suspect that deep down somehow having both rings (his and mine) brought her peace within her never-ending chattering mind… she has a deep need for connection with us.

[Back to the story…]

We got a flashlight from the lady at the house we just went to… NO luck! So my wedding and engagement rings lay resting upon the earth somewhere in the neighborhood… an omen? I think not! Did we punish her? I am certain that there is NOTHING I could have said or done to make her feel any more remorseful and horrible than she already felt… sometimes we are our own worse enemies… I am also certain that she fell asleep crying last night… the ring really meant more to her than I. She new someday it would be handed down to her(being our oldest daughter) and that hurts deep. We will go back out today and retrace our steps, but I am sure it is gone…

[The Loot…]

As the children went through their loot, we cringed at the amount of hfcs and dyes lying on our floor. We knew the kids would ingest more tonight than they had all year combined, which is why I always let them take the day after Beggar’s Night off from school… up late + jacked up on candy + tired = pajama day!!

Emily was still pouting about the ring while sorting, organizing and lining up the piles of candy in front of her; Daddy was upstairs changing into comfortable clothes; and I was on the phone with my sister talking when I saw Sahara dart out of the bathroom and into the kitchen. I got up to follow her and saw she had tweezers by her ear… I asked, “What are you doing?” She replies, “Ear!” “NO Sahara, we don’t put tweezers in your ear,” I see a flash in my head of her lying in my lap as Jim successfully pulled a dried pinto bean from the sensory box from her ear months ago…

HALT!

I listen to my gut and look in there… I think I see something. I quickly tell my sister I have to go and yell for Jim to come downstairs. I lay her on my lap and sure enough I can see something!! He brings me a flashlight and I see A PINK NERD in her ear… I look at Jim and say, “I don’t think you can get this one!” (Yes, that means we have done this before… why our children like to put stuff in their ears and noses is beyond me, but they do.)

[The ER…]

We have this routine down… but not when jacked up on sugar. The kids are antsy, the waiting room semi-packed full of random kids with face masks (and not the ones for Halloween, the kind you get to prevent spreading your germs). I cringe!!

The triage nurse thinks she can get the Nerd out… we say go for it!! She brings in this plastic pick like tool, swoops and… Nothing!! She tells Sahara to sit up, tilts her head and taps the other side of her head and shakes her head a bit… Nothing!! (Yes, that freaked me just a bit!) Sahara puts her finger in her ear before anyone can stop her and it went back to its original position. As the nurse confides in us that she used to work with autistic kids, she says she will make us a priority on the list to get a room.

Within 45 minutes of arriving we are escorting to a room in the ER. I note it is room 28… Emily’s favorite number... perhaps a good sign!

[Or maybe not…]

The ER nurse come in and attempts the same procedure as the first without luck… Sahara is starting to get agitated and I switch positions with my husband so Sahara doesn’t see my concern on my face. (I openly admit I am not calm in emergencies…. especially when my child is screaming in pain!) This nurse goes to get the charge nurse. When the Charge Nurse comes in she starts talking in a normal manner questioning Sahara... whom I answer for. The CN doesn’t see the nerd and starts to question us, “How do you know something is in there? … Did she Tell you? … If you did see it, what color is it?” She pushes my buttons “… just bc YOU can’t see it doesn’t make us or the other 2 nurses wrong… it is in there! We saw it!”

Nurse #1 looks again… “Yes, it is there [tells her location]”. The CN claims she sees it now and tries to swoop it out with the plastic hook… and makes Sahara’s ear bleed… Sahara is screaming, I am cringing, and Emily is repeating, “What is wrong with you mom?” Over and over again! Jim takes a deep breath and is once again our rock!!

Nurse #1 and the CN leave after discussing our options: 1) try the plastic hook again 2) flush it out with warm water… we choose 2.

[Enter Nurse #3]

“Hi Honey, what were you for Halloween?”

I snap, “She can’t answer you… she has autism!”

She handles my response well… I like her! We discuss with her Sahara’s sensory issues and our concerns about the flush. Sahara hates to get splashed with water and it will cause an instant melt down; she is already in pain, agitated, and emotionally spent. We ask her to let Sahara play with her stethoscope (one of her obsessions) to keep her calm.

[Nurse #3 leaves… Reenter #1 and CN]

“So you don’t want to do the flush,” asks the CN.

Jim impresses me with his calm, “No, we didn’t say that!! We are trying to explain the sensory and emotional needs of Sahara and what she needs to support her during the flush.”

“So, what do you want us to do?”

I ask for a surgical brush so I can brush Sahara first and they look at me like I am nuts!!

“Do you want a wash rag?” asked the CN.

“No, I want a small white surgical brush.”

“We don’t have any.”

“You are a hospital that doesn’t have a surgical brush?”

“Do you want an emery board?”

“NO!! I want a surgical brush… forget it I will just do the deep compression with her.”

“The deep what?”

(I am obviously dealing with nurses who have NO clue about autism or sensory issues. I am stunned since this is the same hospital we get all of our Autism Therapy from!)

They come back with a brush… but not the OT brushing protocol surgical brush… I tell them that won’t do. They leave and I rub Sahara’s skin hard with my hands, and then do joint compression. She seems to be calm.

[Enter nurse #3 and a new nurse #4 with a syringe that is HUGE!]

The syringe looks like it has a needle on it (it is a soft attachment to aim the water) and they start to say what they are going to do. I interrupt them and start to explain it to Sahara in broken phrases. I let her touch the syringe and tip, and she yells, “No, I don’t want to!!” The new nurse explains to us that the CN has told them to accommodate whatever requests we have, so I ask for a weighted vest.

… they look at me with puzzled expressions. I tell them to go to the dental trauma area and bring back a lead vest. They comply. After a few seconds of resting under the weight of the garment, Sahara seems calm once again. They demonstrate on me what they are going to do and water goes everywhere… down my clothes (trigger), on my skin (trigger) to the floor (trigger)… She starts to scream and thrash!!

I pray out loud for the Nerd to just pop out.

I quietly send her Reiki to relax her.

The long and short of it is… After another half hour of pain, screaming, and thrashing the nerd has dissolved from the warm water and is apparently gone. Nurse # 3 & 4 say they will send the CN in to confirm it is gone… we request someone else since we the CN couldn’t see it in the obvious position earlier. They FINALLY send in the attending doctor. He confirms that nothing is in the ear canal anymore, that the drum is red and will be sore, but otherwise she is fine and we can go home.

[When you think nothing else could go wrong…]

I tell Jim to take the kids to the car and I will get the discharge papers… after 10 minutes they arrive.

As I am walking to the jeep, I see Emily and Sahara running and crying. (Still not sure what happened other than ‘Daddy yelled at us’.) Everyone is tired and stressed to the max!! But, we all are able to calm enough to get in the jeep and head home.

… are you ready for this?

The plastic encasement on my key busted in half and the remote fell out in the dark at midnight in the ER parking lot!!

After looking for awhile I say, “F#ck it!! Let’s go…”

“Are you sure… “

“Yep, let’s just go!!”

The jeep won’t start!

Apparently you need the chip in the key remote to start the engine!!

Sahara is whining, Emily and Jim are out retracing their steps and I am trying to decide who to call to pick us up because at this point I am exhausted, my children are exhausted and my husband is exhausted and I just want to go home. I open my door to tell him to call his best friend and the remote gleams under the night post.

...the engines starts, we get fast food on the way home and everyone is zonked by 1:00 am.

[Happy Halloween!!]

Did I mention that Sahara was diagnosed with Infantile Autism on October 31, 2008? I vowed I would not let that ruin my passion for Halloween… like I said at the start of this really long (sorry it is so long) post, “I Love Halloween.”

Here are a few concluding thoughts: Yes, parts of last night sucked, but Halloween still kicks a$$! I have confirmed that I love my husband more today than ever! I don’t need a Rock on my hand as my hubby IS my Rock! My kids are making huge progress and have taught me the power of true unconditional love and for that I am grateful! And I am almost certain that all of my other jewelry is back safely in my room and that nothing else will go into the ear that doesn’t belong there.

Well, kind of, maybe certain…

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Open Letter to DQ... How my autistic daughter was abused by your employees

Dear DQ,

This open letter is to let you know that my autistic daughter was insulted, mocked and experienced defamation of character by some of your employees this evening!!

As I was placing my order, my daughter was ordering beside me as well. How ever cute that may sound (and in my motherly eyes it was cute as well as a huge milestone) it opened her up for abuse by your employees. Because of her infantile autism she has a severe speech delay and speech impediment. For the first four years of her life she was catatonic and we have worked tirelessly to pull her out of her inner world and integrate her into the community. Tonight your employees demonstrated that I need to work harder at educating the general populace!

Tonight as she ordered her ice cream next to me in her broken speech (which sounds like baby babble), one of the workers imitated her sounds in a mocking manner!! Not only was I stunned, but so was her 11 year old sister and father! When I announced we could hear them through the speaker, we heard them burst into laughter. No apology!!

When we pulled up to the window, they didn’t acknowledge the incident at all. I am my daughter’s voice until she finds her own, it is my responsibility to speak up for her rights until she can do so for herself. So I informed the worker that I heard everything through the speaker and that I would like to talk to the manager!! The worker did not deny the incident, and meekly said, “Sorry” as he closed the window. I informed the manager that my daughter is disabled and has a condition called autism. I explained to him what happened and he said he heard laughing but was not aware of what prompted the laughter… he apologized and offered me a 25% discount.

A 25% discount!! Is that the compensation for my disabled daughter being subject to humiliation?

The latest statistic published by the government is that Autism affects 1 in 91 children!! So, to you that means that every 91^st kid who comes through your lobby or drive thru is going to be autistic! Your workers must learn not only basic etiquette and common courtesy, but tolerance for those with disabilities. Is it not bad enough we have to fight day and night for the rights of our children with the schools, doctors, insurance companies and politicians… but now with the boys at the local Dairy Queen?

What those workers did was nothing more than bullying and defamation of her character. I have already told many of my friends in the autism community about this incident and many have already said they are going to boycott DQ.

I would like a formal and public apology to not only my daughter, but to the autism community as a whole. And would like to know what DQ as an entity would like to do about this?!?!

Below is the location and information on the order ticket.

Susan Richardson

Dairy Queen

2580 Bethal Road

Columbus, Ohio

Date: October 13, 2010

AIA003984099311

Server 122 Jeffery

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I Don't Want You To Fix My Child!

What if someone told you they wish they could fix your autistic child?

Fix... as in the act of making something that is broken repaired.

Am I being too sensitive?

I do not see my child as broken.

Challenged? Yes, but certainly not broken.

And then in the same conversation this person said, “…but she sure is beautiful.”

Beautiful… as in having great qualities that gives great pleasure or satisfaction to see, hear, and think about.

Am I the only who sees the paradox?

I do not see my child’s beauty as a compensation for her challenges.

Yes, she is beautiful, but more importantly….

…My daughter is Sahara Grace; She is whole, vibrant, and a perfect expression of herself!!

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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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Counting Candy Bars & Breaking Stigmas!

This is HUGE!!!

Sahara counted out 5 Hershey bars at the store (ignore that I let her eat candy bars).

So 1 was thrown away because it melted in the car and 1 was eaten in the store while shopping ... she pulled out the remaining 3 just now at home and counted them and said, "1,2,3.... no 4, 5... where 5? Oh No. Where'd it go?"

Yes, that would be my girl doing MATH!!!!

YAY!!

Tears of Joy Here!

That would be the same kid that was catatonic a year ago and the same kid they said couldn't count 3 months ago and, yes, the same kid they said would never be unable to live, work or socialize independently...

Busting through the stigma people!! If you don't believe in energy work and the power of intention and maternal love I am here to tell you it works! Don't let anyone tell you your kids can't do anything... and if they do... prove them wrong!! Sahara you Rock, Little Miss!! You are my greatest teacher!!

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Back to School.... and I am sad!

I just received the long awaited supply list from Sahara’s school for Kindergarten… and it made me cry!! Not only is my baby going to kindergarten, but it was 3x longer than any I had previously with her neuro-typical sister. And then seeing the personal care section… hit me like a ton of bricks.

Today, I feel overwhelmed with the concept of my daughter not entering a general education classroom. This week, I feel annoyed that I am already advocating for her rights and the school isn't even in session. Recently, I have been wondering how it would be like to just focus on purchasing back to school supplies and clothing like a ‘typical’ family. Right now, I feel sad!

This will all come to pass... and in the mean time I have a lot of shopping to do for just one child.

1. 1 box of colored pencils

2. 1 box of 24 count Crayola crayons

3. 4 bottles of Elmer’s white glue

4. 6 white or clear drying Elmer’s glue sticks (Please not blue)

5. 1 box / roll of industrial strength Velcro ( not the smaller button sized pieces please)

6. 1 pack of 4 count AA batteries

7. 1 pack of D batteries

8. 3 rolls of clear packing tape

9. 1 box of 8 count large washable Crayola markers

10. 3 bottles of hand sanitizer

11. 1 pack of colored bold tipped dry-erase markers

12. 6 boxes of tissue

13. 1 large bag of either of the following: Skittles, Gummy bears, M&M’s or Jelly Beans.

14. 1 of your child’s’ favorite CD’s or DVD’s

15. 1 snack pack size of Zip Lock bags

16. 5 no.2 pencils

17. 3 pink erasers

18. 2 water Crayola color tray sets

19. 1 pair of pointed scissors

20. 1 clipboard

21. 1 pack of 4x6in ruled index cards

22. 2 bottles of Lysol Kitchen Spray

Personal care items (please label)

1. 1 toothbrush

2. 1 nailbrush

3. 1 tube of toothpaste

4. 1 hairbrush

5. 5 plastic grocery bags (for soiled clothing)

6. 2 tubes of Chap Stick

7. 1 bottle of lotion

8. 1 bottle/tube of tear free sunscreen

9. 1 container of deodorant

10. 3 wash clothes

11. 1 bottle of tear-free body wash

12. I blanket labeled with your child’s name

Additional Requested Items

Clorox wipes - we use tons of theses

Large bag of various size and color buttons

Paper plates

Various colored Pom-Pom craft balls

Pipe cleaners

Play- doh, any color will do

Cotton Balls

Magnetic tape or strips

Craft “google eyes”

Any fun and easy board game or puzzle

Clear Self Adhesive Laminate (contact paper)

Yarn –any color

Fabric paint – any color

Bubble mixture and bubble toys

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