Jeanie Leigh Anne
Wednesday, March 7, 2012
Tuesday, July 26, 2011
The Bitter Sweet Truth of a Wanderer
Our local support group had a meeting last month and as bitter sweet as this may sound... we were thrilled to see many new faces. I have had the opportunity now to participate in three PAW presentations in our county sense this spring and amazingly enough they do get easier with practice. I noticed at our last support group at least 5 people refereed to their loved one as being a "wanderer." Very seldom have I heard parents refer to their child in this way. We all hear stories but this time was different. Newbie parents were identifying the true threat that is sometimes associated with an autism diagnosis early enough to hopefully help prevent the unthinkable. This was secretly a proud moment for me that night. The feeling that you get when you take a negative circumstance and make it a positive one deserves a blog post!
The news just gets sweeter! About a week after our meeting I received and email from an autism center in another county inviting me to present at their "Wednesday Live Series" in the fall. Me? I felt good about my last presentation but NOT that good! Washinnaw County (Ann Arbor, MI) is no joke... they have true AUTISM EXPERTS in their hood and somebody thought of me. With every opportunity I get to share my experience with a group, provide manageable strategies, and hopefully help facilitate a transition of fear into piece of mind I am remind how lucky I am to have Abram in my life.
The National Autism Association announced this week that WANDERING found it's home in V40.31- Wandering in Diseases Classified Elsewhere. The creation of this medical code was brought to the CDC's attention in large part by the NAA's ongoing effort to raise awareness and create resources for addressing our loved one's affected by cognitive disabilities like autism who are a risk for wandering or elopement. I have been following the NAA's effort for just over a year now and I assure you, big things are happening. Thank you NAA for your support!
So the bitter sweet truth goes like this... from the very moment Abram was diagnosed (21 months old) I have felt like we missed the boat. I have always had this undeniable gut feeling that his autism was going to be sever regardless our efforts to try and help him. That is the bitter part... The sweet part is I'm okay with autism and sever. Abram is a happy, severely affected child living with autism that needs constant support and that is perfectly okay. For the first time in a long time, I feel like we finally made it on board that damn boat. Our boat might hit some rough weather from time to time but there is nothing like waking up to a beautiful sunrise or sailing into an illuminating sunset with this kid. So long as Abe stays on the boat I couldn't ask for anything more.
The news just gets sweeter! About a week after our meeting I received and email from an autism center in another county inviting me to present at their "Wednesday Live Series" in the fall. Me? I felt good about my last presentation but NOT that good! Washinnaw County (Ann Arbor, MI) is no joke... they have true AUTISM EXPERTS in their hood and somebody thought of me. With every opportunity I get to share my experience with a group, provide manageable strategies, and hopefully help facilitate a transition of fear into piece of mind I am remind how lucky I am to have Abram in my life.
The National Autism Association announced this week that WANDERING found it's home in V40.31- Wandering in Diseases Classified Elsewhere. The creation of this medical code was brought to the CDC's attention in large part by the NAA's ongoing effort to raise awareness and create resources for addressing our loved one's affected by cognitive disabilities like autism who are a risk for wandering or elopement. I have been following the NAA's effort for just over a year now and I assure you, big things are happening. Thank you NAA for your support!
So the bitter sweet truth goes like this... from the very moment Abram was diagnosed (21 months old) I have felt like we missed the boat. I have always had this undeniable gut feeling that his autism was going to be sever regardless our efforts to try and help him. That is the bitter part... The sweet part is I'm okay with autism and sever. Abram is a happy, severely affected child living with autism that needs constant support and that is perfectly okay. For the first time in a long time, I feel like we finally made it on board that damn boat. Our boat might hit some rough weather from time to time but there is nothing like waking up to a beautiful sunrise or sailing into an illuminating sunset with this kid. So long as Abe stays on the boat I couldn't ask for anything more.
So I couldn't find a picture of us on the boat. But... on this day, Abe pulled this boat off the beach and jumped right in and paddled away. Grams ran into the shed and brought back a rope so he could enjoy his freedom safely. This kid has a secrete he isn't ready to share with us just yet... I'm sure of it!
Tuesday, July 5, 2011
The Starfish
There was an old writer that used to go to the beach in the mornings and walk, sometimes for hours, in search of inspiration for his writing. On one such occasion he was taking his walk and as he looked down the beach he saw a human figure moving like a dancer.
The old man smiled to himself at the vision of someone dancing with the sunrise and continued on his way, curiosity having got the better of him. As he came closer he saw that it was a young man and he was not dancing at all. He was reaching down to the shore, picking up something and very gently throwing it into the ocean.
As the old man got closer he called out, "Good morning! What are you doing?"
The young man paused, looked up and replied, "Throwing starfish into the ocean."
"I can see that, but WHY?"
"The sun is up and the tide is going out. If I don't throw them in they'll die."
The boy stated this so matter-of-factly that the old man was taken aback at first, wondering if there was some logic he was missing. He said quietly, "young man, don't you realize that there are miles and miles of beach and thousands of starfish all along it? You can't possibly make a difference!"
The young man listened politely then bent down, picked up another starfish and threw it into the sea, past the breaking waves. He turned to the old man with a smile and said,
There was an old writer that used to go to the beach in the mornings and walk, sometimes for hours, in search of inspiration for his writing. On one such occasion he was taking his walk and as he looked down the beach he saw a human figure moving like a dancer.
The old man smiled to himself at the vision of someone dancing with the sunrise and continued on his way, curiosity having got the better of him. As he came closer he saw that it was a young man and he was not dancing at all. He was reaching down to the shore, picking up something and very gently throwing it into the ocean.
As the old man got closer he called out, "Good morning! What are you doing?"
The young man paused and replied, "Throwing starfish into the ocean."
"I can see that, but WHY?"
"The sun is up and the tide is going out. If I don't throw them in they'll die." The boy stated this so matter-of-factly that the old man was taken aback at first, wondering if there was some logic he was missing. He said quietly, "young man, don't you realize that there are miles and miles of beach and thousands of starfish all along it? You can't possibly make a difference!"
The young man listened politely then bent down, picked up another starfish and threw it into the sea, past the breaking waves. He turned to the old man with a smile and said,
"it made a difference for that one."
Based on "The Star Thrower" by Loren Eiseley
It's a slow day in our wonderful world of wandering. Our family is taking a mini vacation to our favorite get-a-way on Lake Huron AKA my in-laws! When we first brought Abram here he was probably 7 months old... he wasn't sitting up yet, or crawling even. We had no idea back then his love affair for the sand would still to this day be so passionate. Every year Grandma Gardner takes beautiful photographs of the kids on the beach and every year we capture Abram's autism hard at work. Not much has changed in the form of Abram's favorite sitting position on the beach other than his size.
Lake Huron and I have always shared a secret love-hate relationship. I knew the endless touch of water and sand was like heaven to Abram but for me it was more like a meticulous little game of keeping Abram from entering into heaven at such a young age. Visiting the lake when he was 2 wasn't so bad, his mild cerebral palsy seemed to be more severe so his motor skills were not as sharp as they are today. Keeping the sand out of his mouth consumed most my worries.
When Abram was 3 and 4 years old I started experiencing anxiety in ways I never imagined. It was a real treat the year we came for a visit and discovered my father-in-law went around the house and installed eye hook and latches without me having to suggest it. If you knew my father-in-law then you would understand. These were the years Abram would be playing head down in the sand for hours it seemed then jolt up and bolt down the beach. Joe and I took turns running after him countless times until Avery was old enough and faster then us both to go and fetch him. Today Avery charges us a pretty penny for this service however, Abram rarely takes off anymore. It's been a treat to celebrate Abram's acknowledgement of boundaries but we don't dare take it for granted!
Today Abram is almost 7 and we have only misplaced him twice on our many mini vacations to the lake. Once we found him in Grandpa's gardening shed playing on the floor that is made of pea stones. Today he shut himself into Grandpa's garage and sat just behind the door so when I opened it I had to push him out of the way. On both occasions the event only lasted a minute but long enough to make my heart hurt. As much as I know about autism wandering and what to do in the event of an emergency nothing takes my breath away quite like this does.
Summer 2011
Friday, May 13, 2011
Abram Makes the News!
Last summer, then-5-year-old Abram Gardner eluded the ever-watchful eye of his mother, Samantha, and wandered away from his family’s downtown Brighton home.
Abram Gardner, who is autistic and does not speak, bypassed four Mill Pond access points on his one-mile journey to the Brighton Dairy Queen, all in less than the time it took for his scared-to-death mom to begin a frantic search and call police.
As potentially scary as it sounds to any parent, the little boy’s story has a happy ending: A medical director in the area happened to encounter him and immediately recognized him as a special-needs child before calling police, who tracked him down.
“For whatever reason, ice cream was on Abram’s mind that day, and that somehow exceeded his usual No. 1 priority, which is (playing in the) water,” Samantha Gardner said. “We were lucky that day.”
She said the traumatic event led her to research autism-related wandering, also known as autism elopement, and she quickly learned how serious — and frequent — a problem it is for autism-afflicted children and their families.
Locally, she surveyed some of the mothers who make up the Boxing Autism Club of Livingston County — a support group she joined for those families with autistic children — and found they had gone through similar experiences.
Because it’s such a common yet unpublicized problem, she started the Preventing Autistic Wandering project, or PAW project for short.
The goal is to educate families, school districts, medical personnel, law enforcement officials and others on autism-related wandering through meetings and networking.
The project, she said, will include a group of “like-minded people” from varying professions — like social workers, teachers and law enforcement officials — as well as parents of autistic children.
It’s just her now, but she envisions a time when members of the Preventing Autistic Wandering project meet regularly and inform schools, politicians, law enforcement officials and others on the dangers of autism-related wandering.
(Page 2 of 2)
“Autism-related wandering is a dangerous and poorly understood phenomenon that is not always preventable, but is always manageable,” she said. “What is needed is an intensive awareness and training campaign.”
To accomplish these goals, she has created a blog at http://www.preventautismwandering.blogspot.com/.
Online content published for the project is also viewable through the Boxing Autism Club’s site at www.workforautism.com/paw_project.
In addition, Samantha Gardner created a video of the path her son took when wandering into downtown Brighton and posted it on YouTube, viewable by searching for “Abram Gardner.” The video highlights the dangers encountered by a wandering autistic child, and how simple it is for them to elude parents, even for a split second.
She hopes by attracting attention to the Preventing Autistic Wandering project that she will create awareness for the problem.
Abram Gardner, who is autistic and does not speak, bypassed four Mill Pond access points on his one-mile journey to the Brighton Dairy Queen, all in less than the time it took for his scared-to-death mom to begin a frantic search and call police.
As potentially scary as it sounds to any parent, the little boy’s story has a happy ending: A medical director in the area happened to encounter him and immediately recognized him as a special-needs child before calling police, who tracked him down.
“For whatever reason, ice cream was on Abram’s mind that day, and that somehow exceeded his usual No. 1 priority, which is (playing in the) water,” Samantha Gardner said. “We were lucky that day.”
She said the traumatic event led her to research autism-related wandering, also known as autism elopement, and she quickly learned how serious — and frequent — a problem it is for autism-afflicted children and their families.
Locally, she surveyed some of the mothers who make up the Boxing Autism Club of Livingston County — a support group she joined for those families with autistic children — and found they had gone through similar experiences.
Because it’s such a common yet unpublicized problem, she started the Preventing Autistic Wandering project, or PAW project for short.
The goal is to educate families, school districts, medical personnel, law enforcement officials and others on autism-related wandering through meetings and networking.
The project, she said, will include a group of “like-minded people” from varying professions — like social workers, teachers and law enforcement officials — as well as parents of autistic children.
It’s just her now, but she envisions a time when members of the Preventing Autistic Wandering project meet regularly and inform schools, politicians, law enforcement officials and others on the dangers of autism-related wandering.
(Page 2 of 2)
“Autism-related wandering is a dangerous and poorly understood phenomenon that is not always preventable, but is always manageable,” she said. “What is needed is an intensive awareness and training campaign.”
To accomplish these goals, she has created a blog at http://www.preventautismwandering.blogspot.com/.
Online content published for the project is also viewable through the Boxing Autism Club’s site at www.workforautism.com/paw_project.
In addition, Samantha Gardner created a video of the path her son took when wandering into downtown Brighton and posted it on YouTube, viewable by searching for “Abram Gardner.” The video highlights the dangers encountered by a wandering autistic child, and how simple it is for them to elude parents, even for a split second.
She hopes by attracting attention to the Preventing Autistic Wandering project that she will create awareness for the problem.
Families who learn about autism-related wandering, she said, can help take action to make sure it doesn’t happen. She said after her son wandered the first time, she purchased a medical bracelet for him that contains all his vital information.
“There are a lot of families who have children with autism, and a lot of huge risks, so it’s not a bad idea to know a little,” she said.
She will be a guest speaker at the Family Strength Symposium Series from 6-8 p.m. May 19 at Livingston County Community Mental Health Services, 2280 E. Grand River Ave. in Genoa Township.
You can e-mail Samantha Gardner at sam1@workforautism.com.
Contact Daily Press & Argus reporter Frank Konkel at (517) 552-2835 or at fkonkel@gannett.com.
Contact Daily Press & Argus reporter Frank Konkel at (517) 552-2835 or at fkonkel@gannett.com.
Monday, April 18, 2011
Lesson Learned
RoSeS ArE red,
AuTIsm... Light iT uP BluE,
AbRam CaN't SeEm To sTay oUT of TrOuBLe,
NoW wHaT Do I dO?
I'm now a poet, who knew?
Lately it seems like everybody who has bumped into Abram and I comment on how tall he is getting. One day his is in size 7 britches and the next day they simply don't button anymore. This spring has presented a variety of various challenges for me it seems and Abram getting bigger isn't helping matters. I have found myself researching nearly everyday looking for safety strategies I may have overlooked in what appears to be an endless effort to keep Abram out of harms way. Lesson number one, the answers are not always in my computer. Abram will show me what I over looked eventually. I need to pay closer attention to him!
For example, I read somewhere that we should use a double sided key entry deadbolt to lock all the doors that lead outside. We changed our locks but I also read we should never let our child see where we keep the key. Despite what I know I didn't pay much attention to this safety advice when I should have. Instead, I rather learn lessons the hard way, from my own mistakes then put forth the effort in preventing them in the first place. Hence why we had to run out at 9:00 at night to the local 24 hour grocery store for the double-sided deadbolt in the first place. Abram just tried to climb my book self beside the front door where I keep the key to unlock the door. The lesson here, do as I say and not as I do. Get double sided key entry deadbolts for your doors and hide the key, don't let your child see where you keep it! It is really important to never underestimate your child's ability, he or she knows far more than we may think!
I'm not done yet! To make matter's worse, as if wandering wasn't at the top of my list of things to wrap my head around, yesterday Abram decided to use a chair to climb over the bar that separates the kitchen from the dining room. I thought he learned how to open the kitchen gate the other day when I found him showering in the bathroom just off the kitchen in the middle of the afternoon. But the gate was closed! I sometimes think I am loosing my mind, I'm pretty sure I didn't close him into the kitchen. Obviously, that defeats the purpose! There he was, gate closed, sitting on the kitchen counter inside the medicine cabinet with an open bottle of gummy vitamins. I was on the phone with my mother fortunately and she said there was not much left so I'm guessing he didn't eat to too many of them, if any at all. I scolded him and kicked him out of the kitchen. I have four kids, any two of them could have left the gate open. I locked the gate and less than 10 minutes later I found him back in the kitchen (gate closed still) pouring Maalox out into the cabinet and all over the counter top! Then I saw the empty bottle of gummy vitamins...
1-800-222-1222 is the number for poison control! Fortunately, they don't put iron in them for a reason! Lesson here, don't let your child see where you keep your keys or vitamins, supplements, and drugs! Both bottles had "child proof" lids but apparently they need to be Abram Proof! My to do list today... Abram proof upper cabinets.
AuTIsm... Light iT uP BluE,
AbRam CaN't SeEm To sTay oUT of TrOuBLe,
NoW wHaT Do I dO?
I'm now a poet, who knew?
Lately it seems like everybody who has bumped into Abram and I comment on how tall he is getting. One day his is in size 7 britches and the next day they simply don't button anymore. This spring has presented a variety of various challenges for me it seems and Abram getting bigger isn't helping matters. I have found myself researching nearly everyday looking for safety strategies I may have overlooked in what appears to be an endless effort to keep Abram out of harms way. Lesson number one, the answers are not always in my computer. Abram will show me what I over looked eventually. I need to pay closer attention to him!
I'm not done yet! To make matter's worse, as if wandering wasn't at the top of my list of things to wrap my head around, yesterday Abram decided to use a chair to climb over the bar that separates the kitchen from the dining room. I thought he learned how to open the kitchen gate the other day when I found him showering in the bathroom just off the kitchen in the middle of the afternoon. But the gate was closed! I sometimes think I am loosing my mind, I'm pretty sure I didn't close him into the kitchen. Obviously, that defeats the purpose! There he was, gate closed, sitting on the kitchen counter inside the medicine cabinet with an open bottle of gummy vitamins. I was on the phone with my mother fortunately and she said there was not much left so I'm guessing he didn't eat to too many of them, if any at all. I scolded him and kicked him out of the kitchen. I have four kids, any two of them could have left the gate open. I locked the gate and less than 10 minutes later I found him back in the kitchen (gate closed still) pouring Maalox out into the cabinet and all over the counter top! Then I saw the empty bottle of gummy vitamins...
1-800-222-1222 is the number for poison control! Fortunately, they don't put iron in them for a reason! Lesson here, don't let your child see where you keep your keys or vitamins, supplements, and drugs! Both bottles had "child proof" lids but apparently they need to be Abram Proof! My to do list today... Abram proof upper cabinets.
Wednesday, March 30, 2011
Autism Elopement Survey!!
The wheels are in motion! Thank you IAN for your effort in learning more about autism elopement. I got this in my inbox this morning and I wanted to pass it along.
Survey: Elopement and Wandering in ASD
Dear Parent or Guardian,
There have been too many tragic reports of children and adults with autism spectrum disorders (ASDs) losing their lives when they "wandered," "eloped," or "bolted" from a safe, supervised setting. Many dangers face a person with ASD who elopes, including drowning, traffic injury, and encounters with potentially predatory strangers.
Despite the urgent need to address this problem, there has been little research on elopement or wandering in individuals with ASDs to guide families, advocates, and policy makers. Now, the Interactive Autism Network (IAN), with funding and input from the Autism Research Institute, the Autism Science Foundation, Autism Speaks, and the Global Autism Collaboration, is launching a national survey on elopement and wandering in ASDs.
You are being invited to complete the new IAN Elopement and Wandering Questionnaire because you are either the parent a child with ASD or the guardian of an adult with ASD.
Please complete the questionnaire whether or not your loved one actually elopes or wanders. Researchers need information about those who do and do not elope to gain an understanding of how common this behavior is and if there are specific traits or circumstances associated with it.
The questionnaire takes 5 - 20 minutes to complete per child or ward with ASD, depending on whether or not they engage in elopement behaviors. To complete the questionnaire:
Log on to IAN Research.
(If you've forgotten your password or IAN User ID, click on "forgot my password or IAN ID")
Find the Elopement and Wandering Questionnaire listed under the name of each child or ward with ASD in your Family Profile.
Complete the questionnaire.
Repeat for any additional children or wards with ASD listed in your IAN Family Profile.
Thank you so much for your participation in IAN. We appreciate all you do. Please contact us if you have any questions about this new Elopement and Wandering Questionnaire or any other aspect of the IAN Project at 866-348-3440 or ian@kennedykrieger.org. We are here to help.
Paul Law, M.D., MPH
Director
Interactive Autism Network Project
Survey: Elopement and Wandering in ASD
Dear Parent or Guardian,
There have been too many tragic reports of children and adults with autism spectrum disorders (ASDs) losing their lives when they "wandered," "eloped," or "bolted" from a safe, supervised setting. Many dangers face a person with ASD who elopes, including drowning, traffic injury, and encounters with potentially predatory strangers.
Despite the urgent need to address this problem, there has been little research on elopement or wandering in individuals with ASDs to guide families, advocates, and policy makers. Now, the Interactive Autism Network (IAN), with funding and input from the Autism Research Institute, the Autism Science Foundation, Autism Speaks, and the Global Autism Collaboration, is launching a national survey on elopement and wandering in ASDs.
You are being invited to complete the new IAN Elopement and Wandering Questionnaire because you are either the parent a child with ASD or the guardian of an adult with ASD.
Please complete the questionnaire whether or not your loved one actually elopes or wanders. Researchers need information about those who do and do not elope to gain an understanding of how common this behavior is and if there are specific traits or circumstances associated with it.
The questionnaire takes 5 - 20 minutes to complete per child or ward with ASD, depending on whether or not they engage in elopement behaviors. To complete the questionnaire:
Log on to IAN Research.
(If you've forgotten your password or IAN User ID, click on "forgot my password or IAN ID")
Find the Elopement and Wandering Questionnaire listed under the name of each child or ward with ASD in your Family Profile.
Complete the questionnaire.
Repeat for any additional children or wards with ASD listed in your IAN Family Profile.
Thank you so much for your participation in IAN. We appreciate all you do. Please contact us if you have any questions about this new Elopement and Wandering Questionnaire or any other aspect of the IAN Project at 866-348-3440 or ian@kennedykrieger.org. We are here to help.
Paul Law, M.D., MPH
Director
Interactive Autism Network Project
Friday, March 25, 2011
Save The Date!!!
Just when I begin to feel like this tiny little person in this gigantic, noisy world... somebody heard my voice and poof...
Mid-Michigan Autism Association
| Autism & Risk Management Safety Training - Wednesday, April 13 | ||
| Autism Training for Law Enforcement 9 am to NoonDennis Debbaudt, a national speaker on autism safety and risk management will be presenting to law enforcement personnel across Mid-Michigan on the topic of "Autism Risk and Safety Management for Law Enforcement". View the flyer for more information: Autism Training for Law Enforcement Flyer | |
| Autism Safety and Risk Management for Families, Educators and Autism Professionals 6 pm to 8:30 pmIn the evening, Dennis Debbaudt will address families, educators and autism professionals on "Preparing for an Emergency with Autism." View the flyer for more details: Autism Risk and Safety Management Flyer Click the 'SIGN ME UP!' link to register: SIGN ME UP! | |
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