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.

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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 parent’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 will attribute to more 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. This will help 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 🙂

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Posted in Autism, Behavior/ ABA, Down syndrome

Blog #122~Parent Stress and Autism

Blog #122~ Parent Stress and Autism

Research has clearly shown that mothers of children with autism experience more stress, depression and poorer health than is typical of mothers in general. Autism Research Review (ARRI) reports this editorial, “Parental Stress in Autism Spectrum Disorders: In a survey of 219 parents of children with autism, Sharpley, et al. (1997), found that more than 80% reported sometimes being “stretched beyond their limits,” with mothers reporting higher stress levels than fathers.   The authors commented that the three most stressful factors are “(a) concern over the permanency of the condition; (b) poor acceptance of autistic behaviors by society and, often, by other family members; and (c) the very low levels of social support received by parents.”

I know of this stress too well. My son, Nick is 21 years old and has Down syndrome and autism. His impulsivity is at an all-time high. In the 5 minutes I stepped out to roll the garbage bins to the curb, he cleared out a desk drawer and threw the contents all over place. A few days before, he was up at 4am and proceeded to take two bottles of salad dressing and dump them all over the kitchen and laundry room floors.

At least he put the empty bottles in the recycle bin 🙂

dressing

According to an article written in Disability Scoop (www.disabilityscoop.com):

“Mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers and struggle with frequent fatigue and work interruptions, new research finds. These moms also spend significantly more time caregiving than moms of those without disabilities.

Researchers followed a group of moms of adolescents and adults with autism for eight days in a row. Moms were interviewed at the end of each day about their experiences and on four of the days researchers measured the moms’ hormone levels to assess their stress.

They found that a hormone associated with stress was extremely low, consistent with people experiencing chronic stress such as soldiers in combat, the researchers report in one of two studies published in the Journal of Autism and Developmental Disorders.

Such hormone levels have been associated with chronic health problems and can affect glucose regulation, immune functioning and mental activity, researchers say.

autism war girl

Now, I would never compare my level of stress to that of a combat soldier. But I do have to remain on point to keep up with Nick. I must jump out of my skin dozens of times a day when he pushes the ADT keypad, microwave, garbage disposal, and phone intercom buttons, runs upstairs to run the faucets full blast, or empties a full basket of folded laundry and the basket off the second floor.  Mix in sleep deprivation and dodging potential meltdowns situations, topped with a constant barrage of stimming sounds all of which send tension levels skyrocketing.

autism and sleep cartoon

The stress of parenting a child with autism is high for many reasons. Parents cope with grief, worries about the future, struggling to find resources and support for their child on top of handling the behavior and communication issues associated with having autism.

A child with autism may display unpredictable and disruptive behaviors have meltdowns that can be of danger to themselves and others and have trouble sleeping through the night. Deficits in speech and communication can contribute to behavior problems as well. In addition, parents may be dealing with seizure disorders related to autism.

A child’s autism diagnosis affects every member of the family in different ways. Parents must now place their primary focus on helping their child with autism. This may put pressure on their marriage, other children, work, finances, and personal relationships and responsibilities. Much of the focus shifts to finding resources and spending money towards treatment and interventions for their child. These needs can complicate family relationships, especially with siblings.

So what coping mechanisms help a parent dealing with anxiety and drained of energy?

*Get involved with support groups locally and online

*Obtain respite care and apply for funding for supportive services.

*Get your child/young adult into programs and social groups specifically tailored to autism.

*Carve out time to enjoy leisure activities like exercise, massage, meditation and self-relaxation techniques.

These can go a long way towards improving mental health and reduce the strain caused daily. While I try and do most of things, there are some days that push me close to the edge. Ask any parent raising a child with autism and they will tell you that some days you just can’t combat the stress.  That’s what is in my noggin (and heart) this week.

~Teresa

 

Posted in Autism, Behavior/ ABA, Down syndrome

Blog #112~Regression of Behaviors

 

Blog #112 Regression of Behaviors

Christmas 2014 was anything but merry.  The swimsuits, flip flops, suntan lotion and pool toys sat in a pile on the chasse in my bedroom.  We never made it to the Florida Keys for our vacation.  A member of our extended family came down with pneumonia and then a snowball effect of more health problems that included a 12 day stay in the hospital.  Nick wasn’t sure what to make of things.  He is 20 years old and has Down syndrome and autism.  All he saw was his Dad or me taking off all day on hospital visits which were an hour away.  Nick picked up on the fact that something was very wrong.  He was sad and angry and missed being with the extended family.  We spent that two week break unsure of the outcome and shooting from the hip.  In 20 years of raising Nick, I have NEVER seen such a spike in regressive behaviors.

When daily routines are interrupted a child with autism can feel anxious and behaviors regress.  Strict routines, normalized school or work schedules without any unexpected occurrences enable a child with autism to progress best.  However, because the holidays are busy, stressful and filled with the hustle and bustle of foods, gifts, and family; a parent can expect to see behavioral changes.

Back to Nick and those behaviors that spiked, which included the following:

*Increased stimming with objects and louder vocal stimming

*Pushing microwave fan, phone intercom and now house alarm system much more

*Throwing objects and dumping things like a one man wrecking crew.

*Spitting and rubbing snot on flat screen TV, windows, on our clothing.

*Squirting liquid soap in his eyes, rubbing lotion all over himself

nick lotion

*Multiple, violent meltdowns

*Peeing his pants several times

And to top it off, I left a bottle of Febreeze out by accident………Oh nooooooo!

febreeze

FYI, Febreeze and a flat screen TV don’t mix well.  So, we had to purchase a new one……..

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By the way if you Google search “Febreeze on a flat screen TV” there are several entries of other kids doing this.  Nice to know we’re not alone. 🙂

I reported all of this in the school/home communication book.  The school staff wrote back that Nick was definitely not himself. He was trying to pull fire alarms, pinching his cheeks hard as well as a staff member.  To make matters worse, just as Nick was back in his school routine we had two snow days.  On top of that, the kids were off two more for the end of semester and MLK Day.  Oh, and there was a full moon over the holiday break.

autism and full moon

The house is quiet now, and I can focus on writing again. Yesterday, I did a little research on regression of behaviors and holiday breaks.  As I reflect on Christmas 2014, a couple of things stand out.  First of all, Nick’s behavior was magnified because his parents emotional fatigue and lack of emotional availability.  For over two weeks we were back and forth at the hospital.  Nick picked up on the stress.  Secondly, as a family we should have communicated in private about medical updates.  I think back on one particular day.  As I briefed Al on the hospital visit, Nick came over crying and wanted a hug. I had to remind myself that he understands much more of what we are talking about.  He also picks up on the negative vibes of conversations. Finally, one tip I read in my research was so obvious.  But when you are in the thick of things it can be overlooked.  That is, don’t let your kids be aimless.  It’s essential to find ways for them to occupy your child.  When kids are on a school break, they have less structure in their day. Bottom line, they’re going to get into more trouble and conflict because they have the opportunity to do so.

While there was no kayaking, bike rides, beach and pool time or key lime pie over Christmas we did make it through.  Things are slowly on the mend. The cousin’s presents and white elephant gifts are tucked away for now.  The Hormel Cure 81 Ham sits in the refrigerator awaiting a belated Christmas celebration at a later date. The gift of Christmas 2014 is being reminded of how precious life is and how quickly it can be taken away.  In addition, I have a new perspective of how important it is to respect Nick’s needs when there is a school holiday break. That’s what is in my noggin this week.

~Teresa

 

Posted in Autism, Down syndrome

Blog #111~ Constant Child

 

Blog #111~ Constant Child

Last Saturday morning, Nick watched the same DVD over and over.  It was a continuous loop of Thomas the Tank Engine’s, “A Big Day for Thomas”.

Thomas the Train

Twenty years later I didn’t see myself listening to the dialog, and able to recite every line.  At this rate, there will be no break between Nick watching Thomas and my grandchildren following suit.  I can see it now, Hank Jr. saying, Hey Uncle Nick want to watch Thomas the Tank Engine with me?”  I also didn’t imagine stumbling over plush toys that my son dropped from the second floor.

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I didn’t picture myself scrubbing red marker stains off his clothes at age twenty.

Note to school staff:  Markers + Nick = Skin, and Clothes…….

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This got me thinking, having Nick is like caring for a constant child.  Nick is twenty years old and he has Down syndrome and autism.  He can’t stay at home by himself and requires continuous supervision.  Don’t get me wrong, he has made strides doing much more independently (like unloading the dishwasher, putting away groceries, recycling, vacuuming, etc.).  And he does watch age-appropriate movies and listens to grown-up music on his iPod.

Nick tabor hills

But at the end of the day, I’m still wiping snot off the flat screen TV and microwave.  Out in public, he can never be more than arm’s length for fear he may take off running, or to pull a fire alarm.

30 Fire Alarm pulls since 3rd grade. Is there a bumper sticker for that?

firelite-pull-station

I’m not writing this to get sympathy.  I’m simply putting a lens on what the world looks like having a young adult with Down syndrome and autism.  It’s not the end of the world.  But it is a very different world, then I expected.  The stimming, banging, tapping, yelling, dumping, phone intercom and microwave button pushing is constant and mind-numbing at times.  And you never know what he’s going to drop off the top of the staircase.  All I can do is continue working with him to foster independence.  I’ll keep redirecting his inappropriate attention seeking behaviors and have him clean up his messes.

I’ll take Stuart Little and Dora the Explorer over shaving cream any day……

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I will remind myself that the laughter, silliness, sweet kisses and unconditional love of this constant child helps to offset the rest.

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That’s what is in my noggin this week.  Now back to operation red marker removal. 🙂

~Teresa

 

Posted in Autism, Down syndrome, Fun Side of Nick

Blog #78~Christmas Past

Blog #78~Christmas Past

This week; a look at Christmas past with Nick and his older brother, Hank. Having a brother with Down syndrome and autism requires patience and understanding.  It’s not always easy with Nick yelling, dropping things, stimming and giving us all a run for our money.  I give Hank a lot of props for putting up with it all these years.  Here are some of their special times together at Christmas.

Christmas in Texas, no pants required 🙂 Christmas 1

Family gathering back at my parent’s home.  I love Nick’s toothless grin! Christmas 2

Christmas at GMA Theresa and GPA Jim’s house in Chicago. Here’s Nick with his cousins Anna and Sam.  Looks like Nick got a new musical toy 🙂Christmas 3

Christmas and Bears game time!

Christmas 4

They’re getting bigger! 

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My high school boys…..

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I hope that you enjoyed a look back at Christmas past.  I treasure the many fond memories of my boys over the years.  May your Christmas be filled with joy, love and peace. 

~Teresa 🙂