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!!

MAMAPALOOZA COLUMBUS IS BECOMING THE BUZZ OF THE CITY

Mamapalooza Columbus is a branch of Mamapalooza Inc., a mom-owned and operated mother advocacy organization founded by Joy Rose of New York City. Mamapalooza Columbus is connecting local women, mothers and families through music, expressive arts, activism and education for cultural, economic and social awareness. This past May marks the fourth anniversary of Mamapalooza Columbus which has not only created a buzz, but inspired a Mamapalooza Committee of Coordinators, a Back to School Event and even one of the Mamas being showcased on Mamapalooza TV and the Museum of Motherhood.

Columbus, Ohio September, 2010 – Mamapalooza Inc.'s ongoing mission is to create authentic, inspirational, large-scale experiences that will reach millions. Mamapalooza Columbus is energetically helping this mission come to fruition.

It was Mamapalooza Columbus 2010 that inspired four Mothers to unite for the empowerment of the women, mothers and families of Columbus, Ohio. Eileen Clary (HandyGirl!) is leading this committee and is credited with starting the action in Columbus as the Regional Coordinator since 2006. Vanessa Abel (Earth Flutter), Joanie Calem (Sing Along and Dance Along) and Susan Richardson (Exceptional Beyond Labels) have joined Eileen as a Committee of Coordinators and have already begun the planning stages for a Back to School event this fall.

This Committee of Coordinators is hoping more mothers in the city of Columbus will join in the fun with innovative activities that impact the women, mothers and families of Columbus. If you have a product or service that focuses on creativity, fun, health, wellness, financial education, expressive arts or if you’re a Mom-preneur, Mamapalooza Columbus wants you to buzz in too!

Some of the other folks involved with Mamapalooza Columbus 2010 were Randi Mockensturm, Tenara & Candice, 7th House Moon, Majestic Belly Dancing, Elliot 12Trees, Leslie Zak, Nancy Miller/Scentsy, Cynthia Minnich/Clearartview, On The Spot Mobile Massage & Bodywork, Columbus Acupuncture & Wellness Center, and Global Gallery. Thank YOU for making Mamapalooza Columbus 2010 the buzz of the city!

Alexis Chapman, Independent Contractor for M.O.M. (Museum of Motherhood), came out to personally support Mamapalooza Columbus 2010. M.O.M. is a sister organization to Mamapalooza Inc., devoted to educating the world about the contributions of mothers both historically and in contemporary culture. Alexis connected with the Columbus mothers and stayed to enjoy some of the Moms that were rocking the stage! Later she connected with one of the committee coordinators, Susan Richardson, and asked her to be a guest blogger on M.O.M. and to be interviewed on Mamapalooza TV.

Mamapalooza Columbus looks forward to showcasing more mothers and connecting them with Mamapalooza Inc., Museum of Motherhood, Mamapalooza TV and other venues to bring the much needed awareness about the impact of mothers on our community. As Mamapalooza Columbus gains momentum and builds a buzz in the city, they will be looking for reciprocal sponsors to become involved as well as the perfect spot to hold Mamapalooza Columbus 2011 in May. For additional information on Mamapalooza Columbus, contact Eileen Clary at e_motok@yahoo.com. You can also get more information on Mamapalooza Inc. at www.Mamapalooza.com.

A Priceless Moment & Life Lessons Among Monsters

Movie Tickets... $9

Nachos n Cheese... $4.75

"1" Bottle of Water... $3.75

Bag of Pop Corn... $5.75

Raffle Ticket... $1

Pizza... $22

Game Room Tokens... $4

A Mother and Daughter Moment.... PRICELESS!!

I have been wanting to spend some one on one time with my oldest daughter. So, when her Daddy suggested I take her to see Eclipse I embraced the opportunity.

We had a great conversation on the way to the theater and were able to connect during the film. She tickled me pink when she leaned over to exclaim her appreciation for the scenery. Especially because she was oblivious to the passionate kiss taking place as she noticed the serenity of the ice capped mountains and falling snow. It made me appreciate not only her innocence but her obvious connection to nature's beauty!

You have to realize my daughter is not one to be enamored by the romanticism that this movie cradles. She does not have her head in the clouds of boys and fantasy... she does however love a good story full of action though (thanks to her father). I presume she was eagerly waiting for the fight seen the whole 2 hours evident by her subtle movement forward as the fight began.

Me? Well, I love a good romance... and how much more erotic can you get than to be torn between the ultimate bad guy (a vampire) and the ultimate nice guy (a werewolf)? The rawness pulls me in... maybe because my life is so far removed from this. Surprisingly, because I have never appreciated the mysticism of the vampire... even as a young child they terrified me. Perhaps that is why I like this version... they are not portrayed as the thirsty monsters that once harbored my nightmares.

However, I am keenly aware of the propaganda the this saga stands for... mostly motivated by the mighty dollar. I am a little disgusted by the chatter that I heard among women, young ladies and children before, during and after the film...

Putting that aside, I am completely intrigued by the beauty within the ability to capture unconditional love and loyalty captured by Stephanie Meyer in her imagination. I appreciate the awesomeness (is that a word?) within the world of monsters that is created by Stephanie in the twilight saga.

Am I a Twi-Mom? ...Not by a long shot. Am I a little twisted for being enamored by someone 20 years younger than me? ...It isn't the actor that intrigues me, it is the immortality, pain and story behind the character, so no. Do I think there are lessons interwoven within? ... Absolutely!

In a world full of corruption, pain and deceit... we could take some lesson by the Cullens in their unconditional loyalty, love and companionship. Imagine how different the world would be if we all embraced our own inner demons to support our family and loved ones to the extent in which they do for theirs.

Recall on Children's OTCs

43 Cold Medicines are being recalled by their manufacturer, McNeil Consumer Healthcare, after a discovery that they did not meet quality control!!

McNeil Consumer Healthcare in cooperation with the Federal Drug and Food Administration (FDA) are recalling Children Products:

· Tylenol Infants’ Drops

· Children’s Tylenol Suspensions

· Children’s Tylenol Plus Suspensions

· Motrin Infants’ Drops

· Children’s Motrin Suspensions

· Children’s Motrin Cold Suspensions

· Children’s Zyrtec Liquid in Bottles

· Children’s Benadryl Allergy Liquid in Bottles

(Click here and scroll down to see the full list of products being recalled.)

These products are manufactured in the United States and have been distributed in:

· United States

· Canada

· Dominican Republic

· Dubai (UAE)

· Fiji

· Guam

· Guatemala

· Jamaica

· Puerto Rico

· Panama

· Trinidad & Tobago

· Kuwait

The manufacturer stated that these products might have 1) the wrong amount of active ingredients specified in them 2) particles in them or 3) ingredients that have not meet internal testing.

You can reach the manufacturer at 1-888-222-6036 if you have questions or concerns.

Okay, now that I have shared the facts all I have to add is… HOW? At a time with all this technology and medical advancement do we have something to this degree occur? Granted they say they don’t expect any medical emergencies occurring as a result, but do they really know?

If it was alarming enough to pull what I am guessing to be millions of dollars worth of products off the shelves in 12 countries, it has to be worthy of concern. No manufacturer is going to risk losing that much money to pull a product that didn’t pose some sort of high risk consequence. I suspect we are not hearing the full truth, but that doesn’t surprise me none.

If you have administered or a medical facility has administered any of these products, you may want to flood their phone banks with a concerned call. And you many want to consider calling your pediatrician.

Open Letter to President Obama: Time is of the Essence to Meet with Autism Community

Dear Mr. President,

As I think back to the hope I felt watching your inauguration, tears steam down my face. I had this fallacy that you were going to make an extraordinary difference in our community. I know that it has only been 9 months, but on this issue time is of the essence!

I reflect how we cheered, danced and cried as we witnessed history in the making; and now I sit depleted of hope, almost enraged that you continue to ignore the autism community. On September 2, 2009 I saw a great message on a friend’s Facebook wall,

“…thinks that no one should die because they cannot afford health care, and no one should go broke because they get sick. If you agree, please post this as your status for the rest of the day.”

Of course, I reposted it and was amiably pleased to see the message infiltrated through my Facebook network within hours. Then the next day, I was even more amazed to see your response to this posting,

“Barack Obama Encouraged to see this going around today: "No one should die because they cannot afford health care, and no one should go broke because they get sick. If you agree, please post this as your status for the rest of the day."”

But, here is the thing… I am amazed not so much that you (or your PR people) were actually watching what we post… but, more so, that you are watching what we post and what that means about you. Let me explain, you are listening and that means that you have been seeing the outcry of requests from the autism community to meet with you, Michelle, or both… and yet, you continue to not respond. We haven’t even received as much as a “no thank you” in response to this personal invitation.

YET, you responded to a general posting infiltrating the virtual world exactly one week before the requested meet-up with Angela Warner, military mom and autism advocate representing many. Your non-action speaks louder than words, Mr. President.

I am aware you will make an education public address to the youth of America on Tuesday afternoon… please understand that 1 out of 150 (some say 60 now) of these children are inflicted with Autism Spectrum Disorder (ASD). They have communication barriers, cognitive and developmental delays, and sensory deficits… I am certain the majority will not be able to comprehend what they are listening to over the public audio system.

When my daughters’ schools announced that they would be allowing the address to be piped through the classrooms, my initial response was to question how effective this was going to be. Apparently, you are more optimistic than I. I know that my five year old along with the other children experiencing ASD will not comprehend a word you say. In fact, she may have broken thoughts of why the teachers are being intrusive on her set routine to make her listen to this abstract voice that she cannot decipher.

It would probably do you, the voters, the parents, and our children better to meet with the parents on the front line; not only about autism, but education, health care, and the false idealization of no child left behind.

It does take a village, Mr. President, but the village needs elders with integrity that are willing to listen to what the villagers are saying. So, I ask, "Will you listen to what we are saying? Will you meet with Angela Warner on September 9th? Will you help us address this epidemic among our youth? Will you reinstall hope in a community that feels left behind?"

Thank you for your action!
Susan Richardson
Mother, Wife & Autism Advocate

Frustrations Facing The 'Autism Industry'

I find it difficult to comprehend how service providers can charge an exorbitant amount of money and still sleep well at night. As a parent of a child diagnosed with autism, I have researched many viable treatment modalities and service providers. Many groups advertise through books, websites, and talk shows about how beneficial their products are, but they all come with this high ticket.

More frustrating is the amount of children that go untreated or helped because the ticket is so far out of reach. It can be difficult to sort through who is valid and who is out capitalizing on the unfortunate circumstances of so many.

Many families, like ours, have gone from two incomes to one; struggling just to make ends meet. Others have exhausted all resources including refinancing a home to pay for services; left with no other options. And yet others haven’t survived the enormous stress of having a child with autism and have gone from a family to either separated or divorced; supporting two households.

I have heard some providers even say, “If they value the service they will figure out how to pay for it. Money is never really the issue.” I challenge this! I am aware of numerous valid services for these kids that are out of our financial reach.

For instance, the tuition for a private ABA school specializing in autism that still has a $6k balance due after the autism scholarship is exhausted. What about the DAN (Defeat Autism Now) doctor who is charging hundreds of dollars just to walk through the door and tens of thousands of dollars for tests, lab work, procedures, supplements and therapies… None of which is covered by insurance. What about the waiver wait list that is years long?

It is difficult enough to sort through the acceptance of a diagnosis and the muck of what is available to your child, but then once you arrive there to realize you cannot afford to get your child well... is beyond words. Unfortunately, this is the reality of so many families.

Families need resources and they need them now! Someone needs to become proactive in this shift and advocate for our children in order for them to obtain the services and treatments that are rightfully theirs.

Julie Gerberding, the head of the CDC

Something to think about....

Tweety Breaks Through Austim's Glass Wall

I have vivid 30 year old memories of Saturday morning cartoons. Mom would wake us up; still in our pajamas we would race to the front room to the “DA DA DA DA DA DA” of Looney Toons. We weren’t inundated with cartoons 24/7 like our children; this was a two hour excursion after a long week of work and play.

We only had one opportunity a year to see Mickey and Minnie. After our last class of catechism before summer break, we would gather with our classmates in the church basement to watch this yearly flick. I remember the chips and hotdogs; somehow those dogs were the best. I am sure Father Ott prepared them no differently than mom, but I can still smell them in their doughy bun as if it were yesterday.

These fond memories have been embedded in the recess of my mind.... so, when my daughter’s friend gave her a DVD of Looney Toons, I became excited. Finally, appropriate viewing for our kids who have access to cartoons day and night. It was kinda surreal to prepare my own kids to get a glimpse of my past. We popped some popcorn, climbed in our sleeping bags, and the familiar “DA DA DA DA DA DA” began.


But I was surprised! This experience was so different through my mom eyes. I was astonished at the violence and the message of immortality. I found myself interjecting, “Now girls, you know that would really hurt you if you did that.” – Or – “Hmmm, do you think a cat could really come back to life after having dynamite blow up in his belly?”

SHHHHH! (So much for processing.)

I tried to convince myself I was making it a bigger deal than what it was until last night... My youngest daughter was quietly playing in the kitchen while I was on the computer, or least I thought. Suddenly I felt a big “WHAP” on my head; I spun around to see her laughing as she raised the broom back up preparing to whack me again. Then she said, “Bad ol’ putty tat.”

As I stood up in shock, she missed my head but the broom handle came down and smacked my toe, “OUCH... that hurt mama!” I sat back down not knowing if I should laugh or cry. She climbed up into my lap with her head hanging low.

She looked me square in the eye and said, “I sorry!”

Wow... this was the first time I had heard her say something so enduring and heartfelt with such eye contact. I looked deep into her eyes and saw her intense concentration on the words she was articulating. And, again, she said, “I sorry!”

I knew instantly that she truly meant those words; they were not just rote words that she had imprinted in her memory, they had meaning and feeling behind them. I felt my eyes swell up. This was a huge milestone, an instant I will imprint in my memory forever nestled between hotdogs and Sylvester.

Looney Toons was able to inspire a fond memory after 30 years had past. Only this time instead of it being Saturday morning curled up with my sister, it was the catalyst that broke my daughter through her glass wall to meet me in a moment. It ended as quickly as it came, but imprinted in my heart forever