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

Wandering and Autism: 7 Prevention Strategies

 Wandering and Autism: 7 Prevention Strategies

April is National Autism Awareness Month.  According to the National Autism Association, “Nearly half of children with autism engage in wandering behavior. Wandering occurs across all settings, under every type of adult supervision”.

Eloping picture and definition

There are safety precautions and prevention strategies families can put in place to secure a child that may run, bolt or wander.  I’ve had a few scares with my son over the years.  My son Nick is 25 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). Nick has no concept of the danger, and he can be fast; so we are always on high alert both at home and in the community.

A few years back, I wrote a blog addressing elopement which includes 7 prevention strategies. Here is our story of a scary day when Nick went missing, and what we’ve put in place to avoid wandering since then.

Click to read 7 Prevention Strategies for Wandering and Autism: https://nickspecialneeds.com/2013/07/01/blog-60wandering-and-autism/

Wandering and autism

Wandering is a real risk for individuals with autism and other special needs. Putting a plan with prevention strategies in place at home, school and in the community can reduce the risk of your child to elope and provide security for you as a family.  That’s what is in my noggin this week.

~Teresa 🙂

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Posted in Autism, Behavior/ ABA, Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #212~DS-ASD Behavior Management

Blog #212~DS-ASD Behavior Management

Behavior problems are common for individuals having a dual diagnosis of Down syndrome and autism.  Speech deficits hinder a person’s ability to communicate wants and needs, leading to these challenging behavior problems.   As I’ve mentioned in previous blogs, every behavior even the bad ones, are an attempt to communicate something.  For the past 24 years, I have experienced this on the front lines with my son Nick, who has a dual diagnosis of Down syndrome and autism.  It’s important to get a clear picture of what is triggering the problem behavior.  To do this, try taking a step back and determine what is causing the behavior.

For individuals with a dual diagnosis of Down syndrome and autism, some challenging behaviors include property destruction (such as dropping, throwing, dumping things on the floor, and breaking objects).  Other behaviors might include elopement, dropping and plopping, stimming, yelling, repetitive movements and physical aggression to name a few.

There are 5 steps you can take to discover the causes of a problem behavior and prevent it from occurring.  It is important to mention here that, these steps should be taken with the support of a child’s IEP team and ideally using a Functional Behavior Assessment (FBA) with a Board Certified Behavior Analyst (BCBA).  It starts with doing a little detective work.

Detective-clipart-animation-free-images-2

1.What is the problem behavior, describe it?

2. Observe when the behavior occurs and when it doesn’t?  

3. Make a guess about what could be triggering the behavior and what might be reinforcing it.

4. Come up with a plan to prevent the behavior including supports that will help improve it in the future.

5. Track the behavior to see if the plan and supports are working.

Let’s put this into practice with the behavior of a child throwing, dropping, breaking and dumping out things around the house (property destruction):

1.”Billy” returns home from school and goes upstairs to his parents bedroom.  He turns on the water faucets full blast, and takes a photo frame and throws it down from the top of the stairwell where is shatters to pieces.

2. The behavior occurs after school, as his mom is unloading the backpack and reading the communication notebook.  It also occurs when paren’s attention are diverted, (doing chores, talking on the phone) and while the child has down time.

3. The antecedents are sensory seeking, lack of attention, unstructured down tome and boredom. Billy is reinforced by getting negative attention from his parents, who naturally get upset when something gets broken or a mess is made in the house.

4. The plan is for Billy to have a more structured routine during those down times when parents are busy working around the house:

-Create an afternoon visual schedule for Billy to put away the contents of his backpack and engage him in the chores with heavy work (a calming sensory activity).

-Replacement activities will include jumping on his mini trampoline, carrying laundry baskets to the washing machine and loading it, or vacuuming.

-Billy will be reinforced with high fives and praise, followed by a reward, upon completion of these replacement activities.  Rewards may include a choice of a favorite toy, iPad, movie, or snack.

-Billy will also be redirected to use his AAC device (talker) to express his needs.

-Parents are encouraged remain calm, matter of fact with little emotion, making minimal eye contact while using a soft voice, when the child engages property destruction.

5. Parent and teachers will keep a log to track this behavior both at home and in the school setting.

Sample ABC Chart used to do a Functional Behavior Analysis:

ABC chart

Before identifying the antecedent, behavior and consequence on the ABC chart, it is important to look at the setting prior to when the behavior occurred.  Note any changes in medications.  Is the child sleepy, overheated or too cold?  Are there any disruptions in staff or transportation to and from school? Is the environment to noisy or quiet?  These factors can all play a part in causing behavior problems.

The best behavior plans have proactive strategies and supports to encourage good behavior.  In my experience, the behavior plan must be revisited several times a year and tweaked accordingly, to support positive behavior in a child with a dual diagnosis of Down syndrome and autism.  The key to behavior management is to step back and do the detective work, and come up with a plan to cut these behaviors off at the pass.  Working with the IEP team and a certified BCBA behaviorist to develop a behavior plan will lead to better responding thoughtfully to what the child is trying to communicate in their wants and needs.

That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

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Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

Posted in Autism, Behavior/ ABA, Dual Diagnosis Down syndrome and autism

Blog #178~ 5 Behaviors that have Improved with Age

Blog #178~ 5 Behaviors that have Improved with Age

The behaviors associated with autism has made for a very different journey than Down syndrome alone.  My son Nick is 23 years old and has a dual diagnosis of Down syndrome and autism.  I like many other parents, have been in the trenches dealing with some tough, scary and dangerous behaviors.  The good news is that many of these behaviors have improved with age!

Don’t get me wrong, Nick still has behaviors that we continue to work on.  But these 5 behaviors have greatly improved now that he is a young adult:

5 Behaviors that have Improved with Age

1-Eloping/Wandering

2-Haircuts

3-Meltdowns

4-Self-injury

5-Poop Smears

1-Eloping/Wandering

Yes, we have lost Nick a few times and it is one of the most frightening and heart pounding things a parent can experience.  Nick use to think it was funny to take off running.  This behavior has mellowed significantly, with the exception of when he spots a fire alarm.  He’s got a thing for pulling fire alarms, 44 times since third grade!

Big Guy, Nick…

Nick fire alarm shirt

Over the years we have put a few things in place to prevent this from happening.  You can access previous blogs with specific information on how to secure your home and child against wandering in by typing  Blog 142~Wandering and Autism” in the search box.  I still make sure that Nick is arm’s distance from me when out in public.  I also cue him with reminders to “Stay close”, “Big guys keep on walking”, and “Hands to self, Nick”.  Bottom line, now that Nick is older and understands the verbal cues, he doesn’t take off running for the heck of it.

2-Haircuts

There was a time when Nick flailed and put up a fight when getting a haircut.  It was a two-man effort that left us in a pool of sweat with Nick being red-faced and in tears.  Three things that have helped to make haircuts easier are using visuals, immediate rewards and investing in good hair clippers.  The visuals helped him to understand the sequence of events which lessened his anxiety and showed a positive ending to the experience with highly preferred rewards (Sprite and a shower).

haircut visual

Spending the extra money on a quality set of hair clippers helps to make the haircuts go smoother.  In the past several years, what was a two-man operation is easily done by Nick’s Dad, and with no tears or Sprite needed as a reward.

3-Meltdowns

Autism Spectrum Disorder can cause behavioral and developmental problems, one of which is outbursts, called autistic meltdowns.  For many years, especially during puberty, these meltdowns would cause injury such a pinching, bruising and skin cuts to us and those caring for our son.

meltdown

Working with a behaviorist specializing in autism has helped greatly.  Nick has a behavior plan in place that identifies all possible triggers and what to do to prevent a meltdown.  Now these meltdowns are much less frequent and manageable because of learned appropriate coping skills.  More often than not, these meltdowns can be avoided or quickly diffused.

4-Self-injury

Self-injurious behavior can be exhibited by people with developmental disabilities, including autism.  Such behaviors can include, (but not limited to) head-banging, hand-biting, and excessive self-rubbing and scratching.  Having Down syndrome and autism can often limit speech making it frustrating for your child to communicate.  Self-injurious behavior in itself is communicating something, (anger, frustration, fatigue, and  health issues to name a few).

No pinching

Getting a solid behavior plan in place, that identifies triggers that might set off self-injurious behaviors has helped enormously.  This can be done with the help of an autism behavior specialist.  Again, visual supports can help to manage behaviors before they escalate to cause injury.  School or private ABA (Applied Behavioral Analysis) specialist can customize visual supports and other strategies for your child.

Frustrated and Autism

Over the years we’ve identified the triggers that may cause self-injury, and sensing this frustration (for Nick it’s when he pinches his own cheek).  Using redirection and preventing escalation is the key to keeping self-injury to a minimum.

*Poop Smears

Probably the best news is that poop smears are a thing of the past!  There was a time when we were in the thick of it.  However, “Operation Code Brown” has been shut down. 🙂

poop icon

Toilet training has been by far one of the most challenging behaviors to work on having a child with Down syndrome and autism.  It’s a marathon, not a sprint, so be patient.  It requires just as much discipline on the parents part, (if not more) than your child.  We used the Azrin-Foxx Method of habit training as the basis of getting Nick fully trained.  This took many years and commitment but it CAN be done!

Things do get better with age.  These 5 behaviors have much improved, now that Nick is a young adult.  Getting support to address the autism piece has made a huge difference.  If you find yourself up against a wall, look for another solution utilizing the help of autism behavior specialist and the school staff.  Finally, try and be patient and rest assured that as your child gets older, these behaviors will improve.

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

~Teresa

Follow Nick:

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Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

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 and he has wandered off.  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, Dual Diagnosis Down syndrome and autism

Blog #60~Wandering and Autism: 7 Prevention Strategies

Blog #60~ Wandering and Autism: 7 Prevention Strategies

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 instances involving wandering/elopement 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 a dual diagnosis of Down syndrome and autism (DS-ASD).  He has deficits 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 the road behind our house.

 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 passed 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.

7 TIPS FOR WANDERING AND AUTISM RISK MANAGEMENT:

1. Secure your home

Install secure door locks, 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 mobile tracking device

Project Lifesaver (https://projectlifesaver.org), Angel Sense https://www.angelsense.com) and LoJack SafetyNet (www.safetynetbylojack.com) services have wrist and ankle tracking devices.  There are many other mobile 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. Ask your local police department if they have a data base and registration program for individuals with special needs. 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.

7. Work with an ABA Therapist on a Behavior Plan

A BCBA certified behavior therapist can help with understanding the child’s goal and triggers that cause them to wander. The child may be trying to get to something they prefer, or avoid something they don’t want to do. When you can determine the function of this behavior, you can put supports and strategies in place to decrease wandering or bolting. If the behavior is occuring in school, address this with the IEP team and put measures in place to insure safety for your child.

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.  Look for this on Part Two of  Autism and Wandering within the next two weeks.

That’s what is in my noggin this week!

~Teresa 🙂

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall