Posted in Autism, Autism Safety and Wandering, Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism, Resources for Special Needs

Blog #168~ New Disability Identification Card

Blog #168~ New Disability Identification Card

This morning, I attended an event presented by Illinois State Representative, Stephanie Kifowit at the Aurora Police Department.   Last year, she sponsored legislation to create a disability awareness card.  Many individuals in our community live with special needs.  Often, their conditions can sometimes make it difficult to communicate in stressful situations.  This new disability wallet card was unveiled to foster better communication for individuals who struggle during these times.

State Representative Stephanie Kifowit….

FullSizeRender

This initiative was the idea of School Board President Lori Price, who is a parent of a child with Autism Spectrum Disorder. Persons with autism spectrum disorder and other disabilities may shut down, get nervous, panic or display inappropriate behaviors during high stress situations.  The disability awareness card is a tool, to help individuals quickly identify themselves to first responders and other public figures.   An individual can quickly show this wallet card, which will help to prevent a situation from escalating.

Face it, we all get nervous when being pulled over by a police officer.  Imagine what it must feel like for a person medically diagnosed with an intellectual, developmental or mental disability. This wallet card is different from the state ID card, as it contains the following…..

On this card, these conditions may present a person who:

*Appears deaf or unable to understand

*Has difficulty speaking or communicating

*Engages in repetitive or self-stimulating behaviors such as rocking or hand flapping.  

*Becomes agitated due to physical contact or stressful situations

*Acts indifferent or unresponsive

These conditions are stated on the card along with this statement:

“Please do not interpret my behavior as refusal to cooperate.  To better communicate with me, it can be helpful to speak slowly and clearly, repeat questions and allow time for responses.”

“If those techniques are unsuccessful, I request that you contact the person noted below on my behalf as he/she will confirm my diagnosis and provide information you may need about my identity or condition.”

These cards are free to individuals who have been approved by the Secretary of State’s office for an Illinois Person with a Disability ID card.  

For an application click here @https://www.cyberdriveillinois.com

I applaud State Representative Stephanie Kifowit for taking Lori Price’s idea for this simple card, that will improve communication and help de-escalate high stress situations.  This will assist law enforcement and first responders in keeping our loved ones safe.  Readers , please let me know if an identification card like this has been implemented, where you live.  If not, perhaps it’s time to champion this effort!

That’s what is in my noggin this week. 🙂

~Teresa

Who’s getting funky on World Down Syndrome Day, 3/21?

Deadline for ordering your funky socks for World Down Syndrome Day is this Thursday.  Support our campaign to help The National Association for Down Syndrome and our local homeless shelter by ordering and rocking your socks on, 3/21!  Click here to order: https://my.wehelptwo.com/campaign?reset=1&id=373

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Posted in Autism, Autism Safety and Wandering, Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #163~Safety & Your Special Needs Child

autism-elope

Blog #163~Safety and Your Special Needs Child

I’ve written a few posts about elopement in past blogs. The terror of losing a child is unlike anything else.  My son Nick has Down syndrome and autism, and I know first hand how that feels.  It is essential to put safety measures in place to prevent wandering/elopement.  This week’s blog is about safety and prevention measures from a police officer’s perspective.

police-car

Recently at the National Association for Down Syndrome (NADS) retreat, a presentation was given by a NADS member, who is a police officer.  Some of the key points made were on safety and  wandering/elopement prevention.  Seatbelts alone don’t always work for older kids with special needs.  There are many seat belt locks available as well as bigger car seats for children over 65 pounds, which have  5 point restraint.

5-point-harness

There were several suggestions given to promote safety, and prevent elopement.  Putting stop icons on all doors, using door/window alarms,  and changing the locks or moving them higher.  It might also be necessary, (especially if your child is non-verbal), to invest in a tracking device/bracelet and an identification bracelet.  Some police departments have tracking devices available.  For more detailed information on this, type in “Blog #142” in the search engine on the top, right side.  Blog #142, gives specifics on elopement and autism.

caretrak bracelet

Nick wears a medic alert bracelet that stays securely on.  Information on the back includes his name, medic alert number, Down syndrome, autism and non-verbal.

medic-alert

Check with your local police department about getting in the data base to provide more detailed information about your child with special needs.  Here in Illinois, the Premise Alert was mandated, in 2009. The Illinois Premise Alert Program (Public Act 96-0788) provides for Public Safety Agencies in the State of Illinois to allow people with special needs to provide information to Police, Fire and EMS personnel to be kept in a database.

In addition to the  Illinois Premise Alert Program, a new program aims to take 9-1-1 a step further. Smart911 is a program that supplies 9-1-1 operators with detailed personal information, including names of family members, photos, allergies, pets and more.

smart911

Smart911 is available in participating dispatch centers across the United States.Smart911 enhances the information that a 911 call can provide and helps first responders help you faster during an emergency.  Citizens create an online profile through a secure website at www.Smart911.com. This profile contains information that might be important in an emergency. If you place a 911 call anywhere within the county, your profile is displayed to the 911 dispatcher at the Emergency Communications Center, and the information is relayed to first responders.  Smart 911 is a national service that is available free to everyone. The service can be especially valuable to households with young children, seniors, or anyone with a physical or mental disability.

It is essential to take precautions to promote the utmost safety and security for you child with special needs.  Especially if they are non-verbal and have no concept of how to keep themselves out of harms way.  That’s what is in my noggin this week.

~Teresa

Follow Nick:

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@tjunnerstall on Twitter

 

 

Posted in Autism, Autism Safety and Wandering, Down syndrome

Blog #142~Elopement and Autism

Blog #142~Elopement and Autism

Have you ever lost your child?  It’s the worst feeling ever.  April is Autism Awareness Month, it is essential to put supports in place to prevent your child from wandering off.

autism elopement

My son Nick is 22 years old and has Down syndrome and autism.  There have been a few times where he has taken off.  Since then, I have put supports in place and done some research on more precautions to take.  I found an excellent website called AWAARE which stands for Autism Wandering Awareness Alerts Response Educationwww.awaare.org.  This site has a comprehensive list of tips, materials and tools.  Take action now to protect your child…….

Secure your home

Install secure deadbolts, home security systems, install inexpensive battery operated alarms on door and window to alert when opened. Place hook and eye locks on all doors above your child’s reach.  Fence in the yard and put visuals like stop signs to doors.

photo (115)

Consider an ID Bracelet

Medic Alert, www.medicalert.org  is what Nick wears and it stays on him firm.  Another popular bracelet is called Project Lifesaver, http://www.projectlifesaver.org

photo (116)

Teach your child to swim

A large percentage of the headlines for wandering and autism end tragically because of drowning deaths.  Check your local YMCA or special recreation association for swim lessons.

autism missing pic

 

Alert your neighbors

Make a simple handout with your name, address, phone number, information about your child (autism, non-verbal etc….) and include a photograph of your child.   Ask them to call you immediately if they see your child outside of your home.

Alert First Responders

Provide the local police and fire stations with key information before an incident occurs.  See the AWAARE website given above for printable handouts.  There is also a free Big Red Safety Toolkit with free downloads on wandering and prevention.

Consider A Monitoring App

*iPhone Baby Monitor App

*Kids ID App

*KidStatz App

kids id phone app

Consider a GPS Locater Tracking Device:

Project Lifesaver (https://www.projectlivesaver.ort)

Lo Jack Safety Net (https://www.safetynetbylojack.com)

These locaters range from $125.00-$250.00; monthly monitoring fees vary:

*Angel Sense GPS Device (https://www.angelsense.com)

*Amber Alert GPS (https://www.amberalertgps.com)

*Trax Personal GPS Tracker (https://www.traxfamily.com)

Being prepared and proactive is vital for a child who is an eloper and may bolt at anytime.  It will also help you as a parent to feel more confident in the safety of your child.  That’s what is in my noggin this week!

~Teresa

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Posted in Autism, Autism Safety and Wandering, Down syndrome

Wandering and Autism

Wandering and Autism

Wandering and autism

Spring is here, the flowers are blooming, and everyone wants to get outdoors.  Do you know a child who is an eloper?  My son, Nick who has Down syndrome and autism.  He has wandered off and been an eloper.  It’s a parent’s worst nightmare. Here are some action steps you should take to insure their safety @https://nickspecialneeds.wordpress.com/2013/07/01/blog-60wandering-and-autism/

Deck time, Nick and his stim objects…..

nick and tappers

Thank you for reading and sharing this critical information about wandering and autism.  That’s what is in my noggin this week.

~Teresa 🙂

Posted in Autism, Autism Safety and Wandering

Happy Memorial Day

memorial day

Take some time today to remember and honor the brave soldiers who fought for our freedom.  I’ll be back next week with a new post.

Did you get a chance to read these two posts from last year about “Wandering and Autism”?   They contain crucial information that everyone should know as we move into the warm weather season:

@https://nickspecialneeds.wordpress.com/2013/07/01/blog-60wandering-and-autism/

https://nickspecialneeds.wordpress.com/2013/07/29/blog-62wanderi…autism-part-ii/

Have a blessed day and thank you for reading and sharing Nick’s world.🙂

~Teresa

Posted in Autism, Autism Safety and Wandering

Blog #62~Wandering and Autism, Part II

Blog #62~Wandering and Autism, Part II

One of the worst nightmares any parent can experience is a missing child. It’s awful to imagine that it can happen.  Being prepared is important in case the nightmare ever becomes a reality.

A few weeks ago in Blog #60~Wandering and Autism @https://nickspecialneeds.wordpress.com/2013/07/01/blog-60wandering-and-autism/   I wrote about a personal experience we had when Nick took off and provided some safety tips and links.  This week I want to expand on this topic and provide more resources that I have found.

I placed a call to our local police department here in Aurora, IL to see what systems they had in place for dealing with a lost child who has special needs.  The detective assured me that all missing child cases are handled as high priority.  Canine units are also utilized in searches as well.  I found it interesting that all intersections are equipped with cameras that are monitored 24/7.  Since this phone call I have provided the police department with the vital information about my son Nick, who has Down syndrome and autism.

Information to provide to local police department:

Child’s name

Home address with names of family members and phone numbers

Child’s diagnosis/ is the child verbal or non-verbal?

Physical features (height, weight, etc…)

Behavior concerns (no fear of danger, possibility of a meltdown, how to approach child)

Current school

Our address is now flagged in the department’s data base with this information.  Check with your local police department to see what system they have in place.  Some departments such as nearby Naperville and Plainfield, IL both offer the GPS bracelets (through the police departments) for special needs kids and the elderly with a tendency to wander.  The bracelet costs about $150.  Radio monitoring kicks in upon calling 911.  There is no cost and the police are in charge of this. If there is a financial hardship, check to see if the department will waive the cost of the bracelet. The device is called Care-Trak  (www.caretrak.com).

caretrak bracelet

Here is another site with some great safety devices and information:

http://www.autismspeaks.org/family-services/resource-library/safety-products

In addition, there are phone apps that are available for monitoring and providing information to the authorities about your child.  Here are a few that I found:

iPhone Baby Monitor ($4.99) acts much like a baby monitor does to watch your child while they are sleeping.

Kids ID ($3.99) Takes recent pictures of your kids so they are readily available, plus you can input their size, medical history, and other important data that would help law enforcement find your child as soon as possible. The app allows you to send all of your child’s information directly to law-enforcement agencies.

kids id phone app

KidStatz ($0.99) provides you with the opportunity to store information about your kids in the iPhone that can later be shared with law enforcement if they go missing. As with Kids ID, the app lets you to take a picture of your kids, input important identifying information, what kind of medical conditions they have, and any birth marks or other identifying information that might help law enforcement find your children. The app also provides a way to e-mail or call law enforcement to quickly react to your missing child.

Pictures and videos of your child in a natural setting (not forced smiles) are advisable to have available for officers as well.  If your child is drawn to anything (railroad, water, small spaces, etc..) be sure to include that information to the police department.

The following advanced GPS locaters range from $125-$250 and the monthly monitoring fees vary:

Angel Sense GPS tracking device (www.angelsense.com)

Amber Alert GPS tracking device (www.amberalertgps.com)

Trax GPS tracking device (www.traxfamily.com)

Being prepared and proactive is vital if you have a child who wanders or likes to bolt.  I hope these tips and links will help insure the safety of all children and especially those who have autism and other special needs.  That’s what is in my noggin this week!

~Teresa

Posted in Autism, Autism Safety and Wandering

Blog #60~Wandering and Autism

Blog #60~ Wandering and Autism

Wandering and autism

HEADLINES…… 

“Car hits, kills 11-year-old autistic boy on the Katy Freeway” 

“Body found in pond is missing autistic child” 

“Autistic boy found dead, face down in a lake”

A lost child is a parent’s worst nightmare. Sadly, the headlines above are just a sample of wandering and autism all over the country.

Much like the wandering behaviors in seniors with dementia or Alzheimer’s, children and adults with an Autism Spectrum Disorder (ASD) are prone to wandering away from a safe environment.  A study done by The Interactive Autism Network through the Kennedy Krieger Institute found this: “49% of children with autism attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings. Two in three parents of elopers reported their missing children had a “close call” with a traffic injury. Thirty-two percent of parents reported a “close call” with a possible drowning.”

I understand this fear all too well.  There have been a several occasions where Nick has wandered, taken off at the pool and bolted down the street.  Nick is 19 years old and has Down syndrome and autism.  He is challenged in the areas of language and cognitive function which limits his understanding of safety.  He has no concept of danger.

One day when Nick 11 years old he was on the swing set in the backyard.  His Dad stepped inside to grab a baseball hat for a second.  Something made me stop and put down the garden shovel next to the flat of flowers. I walked around to the backyard.   He was gone.

Al came out the patio door.  I shouted to him, “Did Nick go inside?”

“No, I just came in for a second to grab a baseball hat.”

I felt a hot wave run through my body as I climbed up the burm, the slow crested hill that separated the backyard from the busy street.

downsized_0511010726 (2)

Al had recently ruptured his Achilles tendon and was wearing a therapy boot.  He hobbled up slowly behind me.  There was nothing but a stream of fast moving cars pacing Montgomery road.

 I called out to his older brother, “Hank, go to the front and check with the neighbors and see if anyone saw him okay. Do it now!”

My neighbor came over, “I saw him a few minutes ago.  He got off the swing and started chasing a bunny.”  He pointed his finger left, “He ran that way.”

In the Midwest, the yards blend from one to the next in a seamless row like football fields connected one after the other. I squinted hoping to see some movement.  There was nothing,  just eerie silence. I took off running.  A dozen houses down, nothing.  Over ten minutes had past since he had gone missing. I was in panic mode, my body was shaking and legs began to fatigue.  I kept sprinting but there were only five houses left before the subdivision entrance.   Suddenly, I saw a small figure running. “Nick stop now!”

He just kept going.  My strides turned into leaps.  I caught up with him 2 houses before he reached the subdivision entrance.  He looked at me as if nothing was wrong.  We walked in silence back home.  I gripped his hand tightly and counted how many houses he had run passed.  Final count=20 houses!

It makes me sick to my stomach recalling that horrible day. We have since put some things in place as a precaution to keep Nick safe. What can families do to insure the safety of their child?  In my research, I found an excellent website called AWAARE which stands for Autism Wandering Awareness Alerts Response Educationwww.awaare.org.  This site has a comprehensive list of tips, materials and tools.

TIPS FOR WANDERING AND AUTISM RISK MANAGEMENT:

1. Secure your home

Install secure deadbolts, home security systems, install inexpensive battery operated alarms on door and window to alert when opened. Place hook and eye locks on all doors above your childs reach.  Fence in the yard and put visuals like stop signs to doors.

Here is what we have on our doors…….

photo (115)

2. Get an ID Bracelet

Medic Alert, www.medicalert.org  is what Nick wears and it stays on him firm.

photo (116)

Another popular bracelet is called Project Lifesaver, www.projectlifesaver.org.

3. Consider a tracking device

Project Lifesaver or LoJack SafetyNet services have wrist and ankle tracking devices, www.safetynetbylojack.com .  There are many other GPS tracking systems you can purchase at Best Buy and other big box stores along with phone apps as well.  See the resource page on the AWAARE website above for more information.

4. Teach your child to swim

A large percentage of the headlines for wandering and autism end tragically because of drowning deaths.  Children are often drawn to water.  Check your local YMCA or special recreation association for swim lessons.

autism missing pic

5. Alert your neighbors

Make a simple handout with your name, address, phone number, information about your child (autism, non-verbal etc….) and include a photograph of your child.   Ask them to call you immediately if they see your child outside of your home.

6. Alert First Responders

Provide the local police and fire stations with key information before an incident occurs.  See the AWAARE website given above for printable handouts.  There is also a free Big Red Safety Toolkit with free downloads on wandering and prevention.

Nick still requires 24/7 supervision and the house is sealed up like Fort Knox.  As a family we have to make sure there is always a designated watchman.  After doing this research on autism and wandering, I understand the necessity to be proactive and more responsible. Next stop: Make a call into the local police and fire stations to see what they have in place for wandering and persons with autism and other special needs in our community.   Discussion of this topic needs to continue.  I will be researching more tracking and monitoring devices.  So, look for Autism and Wandering, Part Two very soon.  That’s what is in my noggin this week!

~Teresa