Posted in Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism, Education and Special Needs

Blog #186~Down syndrome:How to Promote Inclusiveness in School

Blog #186~Down syndrome: How to Promote Inclusiveness in School

DSAwarenessMagnet     Peer Partners

October is Down syndrome Awareness Month.  This is an ideal time to promote inclusiveness in your child’s school.  Forming a partnership with your child’s education team is the key to a successful inclusion experience.

Here are a few resources and suggestions on how to advocate for inclusion in your child’s school environment and classroom:

*Send an “All About Me” introduction about your child to the teacher.  There are many ideas, templates and apps that are available online.  This is especially helpful, if your child’s speech is limited or non-verbal.

all about me app

*Share inclusion resources with your child’s teacher:

  • Meaningful Inclusion for Students With Down Syndrome: A Resource for Elementary Educators. http://www.mdsc.org/infojustforyou/EdManual.cfm
  • The Inclusive Class: http://www.theinclusiveclass.com/
  • Inclusion in the Classroom-Tips and Resources: http://allbornin.org/wp-content/uploads/2012/11/Inclusion_Classroom_Tips.pdf
  • Donate books to the library and classroom:               I can Can you  Paint the Octopus Red  My Friend has DS

*Topics on Down Syndrome, that are helpful for teaching from Woodbine House Publishing: http://www.woodbinehouse.com/  Books related to Down syndrome are ON SALE during the month of October!

Whole Child Reading         Down syndrome and autism intersect2      Teaching Math to DS        fine motor skills and DS

Working with the school team to promote an understanding about Down syndrome, and a dual diagnosis of Down syndrome and autism has many benefits.  It will help students in general education classes feel less anxious and reduce misconceptions they may have had.  Building this bridge together, will lead to a meaningful learning experience for everyone in the school.  That’s what is in my noggin this week.

~Teresa 🙂

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Posted in Behavior/ ABA, Down syndrome, Dual Diagnosis Down syndrome and autism, Parenting Special Needs

Blog #185~ Down Syndrome: Supporting Positive Behavior

Blog #185~Down Syndrome: Supporting Positive Behavior

This month’s blog posts have focused on behavior management, specifically to individuals who have Down syndrome and autism.  I recently read, Supporting Positive Behavior in Children and Teens with Down Syndrome.  This book by pediatric psychologist, David S. Stein gives a comprehensive breakdown of how to deal with challenging behaviors, with a specific look at how the brain of a person with Down syndrome works.

Book Supporting Positive Behavior DS

This book is a must read for anyone who cares for, or works with, a child or teen with Down syndrome.  I only wish that this book had been available when 23-year-old son, Nick, was younger.  One of the key messages from this book, is how to look at behavior.  If you view a bad behavior as willful or intentional, the immediate reaction is to punish.  However, it is important to consider that the behavior is communicating some need.  The first section of this book, dives into the brain of a child with Down syndrome and cover behavior basics “101”.

In chapter 5, there is a step by step guide to behavior management system designed for children with Down syndrome:

Step 1:  Maintain the relationship (keep it positive)

Step 2:  Structure the environment for success

Step 3:  Use visuals, visuals, visuals

Step 4:  Notice good behaviors and set up token economies

Step 5:  Use proactive strategies to prevent negative behaviors and support positive behaviors

Step 6:  Manage the difficult situation before they happen 

The underlying theme in this book is how you approach behaviors.  Acknowledge that the behavior is NOT a willful or intentional act designed to make you upset.  Instead, view the behavior as an expression of some unmet need or challenge that has not been addressed.

“You can respond to a behavior thoughtfully, rather than emotionally.  You can learn to respond…but don’t react.”

Throughout the book, this is the common thread.  Respond… but don’t react.  Take your emotions out of the equation, and sometimes your gut reaction as well.  There are several chapters that address positive behavior management at home, school, community and with siblings.

When disciplining or responding to behavior, here’s what you should and should not do:

 You should:

*Take away eye contact.

*Keep your facial expressions neutral.

*Speak very little, if at all.

*Keep your tone of voice neutral.

*Keep your emotions in control.

*If removing attention and emotions is not enough, then direct the child to “take a break”.

And you should not:

*Look right at the child

*Make angry or upset faces.

*Try to explain, using words, why or what they did was horrible.

*Speak in a harsh, animated way.

*Show strong emotions.

Whenever possible, look for ways to prevent the behavior in the first place.  Try to determine what is causing the behavior, and what this functions serves the child.

There are often times which may be more difficult and cause more behavior problems.  These often occur in transition times, and especially during puberty.  These are addressed specifically in this book, along with when and how to seek help from a certified behavior specialist.

This book, Supporting Positive Behavior in Children and Teens with Down syndrome, is a concise guide to understanding behavior and how to manage it thoughtfully, by responding and not reacting to meet a child’s needs.  David S. Stein, packed a lot of punch into 132 pages.  I highly recommend adding this book to the cart.  That’s what is in my noggin this week.

~Teresa 🙂

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Posted in Autism Spectrum Disorder (ASD), Behavior/ ABA, Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #184~ Addressing Problem Behaviors in Individuals with DS/ASD

Blog #184~Addressing Problem Behaviors in Individuals with DS/ASD

Problem behaviors in individuals with Down syndrome and autism (DS/ASD), are very common.  Speech deficits, make it difficult to communicate wants and needs.  Often individuals with DS/ASD, may exhibit problem behaviors to communicate something.  Last week I participated in a webinar about addressing such behaviors, led by Sam Towers (http://sam@towersbehavior.com), that was hosted by The Down Syndrome Association of Minnesota.  Here is a summary of this webinar on addressing problem behaviors in individuals with DS/ASD.

First of all, it is important to build rapport.   Establish a friendship with kindness, and positive activities that the individual enjoys.  This will provide the basis for teaching the person, that there are other ways, besides problem behavior, for achieving goals.  Sam suggested a 10:1 ratio of praising good behaviors.  Praise encourages the individual to do it again.

Why do people use problem behaviors?

1.Get attention

2.Get something

3.Escape or avoid something unpleasant

4.Get a pleasant sensation

All behaviors allow a person to achieve a goal, because the payoff is reinforcement.  You get what you pay more attention to.  The idea is to avoid letting problem behaviors have a payoff.  So, focus ALOT more on addressing the good behaviors.  This can be done by building skills, through teaching replacement behaviors.  If a child is throwing things to get attention, the replacement behavior could be to teach them to tap you on the shoulder or use their communication device.

My son Nick is 23 years old and has a dual diagnosis of DS/ASD.  He has many behaviors that are used to get attention or something, and provide a pleasant sensation.  Part of the autism piece is sensory related.  Flushing the toilet repeatedly, pushing the microwave fan or phone intercom buttons are ways that he stims, which is a form of self-entertainment.  One suggestion, for this would be to teach other ways for him to entertain himself.  Some supports that I recommend, are to use social stories, redirect to an AAC (Aumentative Alternative Communication) device, PECS (Picture Exchange Communication) book, or create a choice board.

Choice Boards:

choice boards

If an individual is trying to get out of an activity, they may exhibit behaviors like self-injury, yelling, or stop-drop and plop.  In these cases, it’s important to provide supports like, a first-then charts, “take a break” card, noise cancelling headphones, a visual schedule, or a timed timer.

timer app    first then  1,2,3,4 Sprite

Bottom line, you can’t let the problem behavior become the payoff.  The single most effective way to get rid of a problem behavior, is to arrange things so that there is no payoff (reinforcement) for the behavior. Completely withholding reinforcement can be difficult, and often leads to an increase in the behavior.  This is called an extinction boost.  But if you stick to your guns, this will result in the behavior decreasing.  The key is to be consistent in not rewarding the undesirable behavior.  If it is reinforced intermittently, it will cause the behavior to be more long-lasting, because there is still some payoff for the individual.

Understanding the reasons people use problem behaviors, building skills and supports to teach replacement behaviors, praising 10:1 good behaviors, and arranging things so that there is no payoff for the problem behavior are all great tools for addressing problem behaviors in individuals with DS/ASD.  Here are a few resources which may also help:

Edward Carr Book    Social Story Book  visual strategies book

When Down Syndrome and Autism Intersect,
edited by Margaret Froehlke and Robin Zaborek:  

down syndrome and autism intersect

A special thank you to the Down Syndrome Association of Minnesota and Sam Towers of Towers Behavior Services for an informative webinar.  Now, it’s time to make a new choice board for Nick.  Have a great week, everyone.

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

~Teresa

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

Blog #182~Hurricane Harvey and the Texas Way

Blog #182~Hurricane Harvey and the Texas Way

Hurricane+Harvey+1280x720

As a native Texan, I grew up just a few blocks from Galveston Bay.  This was our playground growing up.

Seabrook watching the boats come in, with my siblings in the early 70’s…..

3 investigators

I’ve ridden out my share of hurricanes and tropical storms over the years.  Hurricane Harvey has pounded the Texas Gulf Coast.  It continues to churn, with record rainfall that is causing catastrophic flooding.  I’ve been thinking a lot about my fellow Texans, and dealing with such disasters.  Much of what has giving me strength over the years of raising my son Nick, who is 23 years old, and has Down syndrome and autism, comes from the mentality of the “Texas way”.

The author, John Steinbeck wrote in part, that “Texas is a state of mind”:

“For all its enormous range of space, climate, and physical appearance, and for all the internal squabbles, contentions, and strivings, Texas has a tight cohesiveness perhaps stronger than any other section of America.”

Texans are incredibly proud of where they come from.  The people are friendly to one another, and will go out of their way, to help each other out.

I recall riding out Hurricane Alicia in our home, back in 1983.  The category 3 hurricane hit hard with winds up to 115 mph, during a long, pitch black night.  The next day, we crawled out from under the mattress propped up in the narrow hallway.  We found tree limbs and debris covering the yard and had no electricity.  Our neighbors banded together, bringing their chain saws to clear the rubbish.  We pulled up lawn chairs, and portable gas stoves, to cook up the food that was quickly thawing in the deep freezer.  We stood in long lines together, as comrades waiting to get ice bags, sharing stories together.  For two weeks, with the power lines down.  There was no electricity in the humid and unbearable August heat.  What I remember the most about this time, was the sense of camaraderie.  Everyone was pitching in, lending a hand, and working together.

Hurricane Alicia, 1983……

Hurricane Alicia 1983

Watching the news over the weekend, I again, was witness to this sense of community and teamwork.  The riveting images of civilian Samaritans bringing their boats, rafts, kayaks and canoes in to help with rescue efforts.  Volunteers coming in with high-profile pickups, and dumpster trucks being used to save other human beings.

Rescue efforts after Hurricane Harvey…….

Harvey rescue

I love this message from George and Barbara Bush, to their fellow Houstonians and Texans affected by Harvey, expresses the spirit of Texans: 

“We are praying for of our fellow Houstonians and Texans affected by Harvey, and truly inspired by the flotilla of volunteers–points of light all–who are answering the call to help their neighbors.  We salute them, the first responders and local elected officials for their grit and determination in the face of this extraordinary storm.  This we know: Houston and Texas, will come together and rebuild.”

That’s exactly what it is–coming together, and helping each other, and never backing down.  That’s the Texas way.  When you are down, you’re not out.  That’s when you pick yourself up by the bootstraps, brush off the dust and push through.

This road of raising my son with Down syndrome and autism has not always been an easy one.  The hurdles have been tough. Reaching milestones, the long process of toilet training and the intense meltdowns during puberty took their toll. I wouldn’t have survived, without reaching out for help. I found a community of parents who had children with a dual diagnosis of Down syndrome and autism.  This community saved me.  I know that my strong roots as a Texan, has kept me upright, in the process.  That grit and determination, has helped to push me through some of the roughest times.

The power of human spirit coming together can help to overcome the worst of adversities.  Jumping in and helping each other out, with a warm smile, IS the TEXAS WAY.  Texas will be drenched and soggy for a while, but they will never give up. Texans will pull together, become cohesive, and they will survive!

Please continue to pray, as the water continues to rise up the driveways, and into the homes, of my family and friends in Texas.  I know that they will come together, with resiliency, and get through this catastrophic event.

Here is a link if you would like to help and share on social media: The Houston Flood Relief Fund@ https://www.youcaring.com/victimsofhurricaneharvey-915053

That’s what is in my noggin this week.

~Teresa

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

Blog #180~Special Needs Moms,Let Go of the Guilt

ou Blog #180~Special Needs Moms, Let Go of the Guilt

No Guilt

Am I doing enough for my child?  Should I switch to a gluten-free diet?  Does my child need ABA (Applied Behavioral Analysis) therapy?  Maybe I should be diffusing essential oils?  These and many other questions swirl constantly, in the mind of a parent having a special needs child.  I should know after 23 years of raising my son, Nick.  He has a dual diagnosis of Down syndrome and autism.  Over the years, I’ve allowed doubt to creep in.  You see other moms talking about intense ABA therapy, up to 20 hours a week.  You hear testimonials of how a gluten-free diet helped to increase speech and decrease problematic behaviors.  Then, there are the success stories and pictures plastered over social media groups.  Compelling accounts of children excelling in Special Olympics, summer camps, recreational programs and the latest programs sure to launch your child new heights.  There is a tremendous amount of pressure to do it all.  So, you begin to question yourself as a parent.  Am I doing everything I can to help my child with special needs?  This is when the guilt begins to seep in.  That’s, when you need to let go of the guilt.

Parenting is a balance act.  The responsibilities of running a household, taking care of children and their activities along with your own personal job and welfare, can be enormous.  At several points over the last 23 years, I’ve hit walls where the pressure is just too much.

At those junctures, it’s important to stop, take a breath, and re-evaluate what works for your child with special needs, and the entire family……

*RE-EVALUATE- Which treatments, therapies, and recreational programs are useful? Where are you seeing growth and enjoyment for your child?  Weigh the benefits against the disadvantages of each program, treatment, and therapies that you are considering.

*PRIORITIZE- What activities are essential for my child and any siblings?  Which of these activities are needs/must haves (like swimming lessons), and which are wants (like a recreational soccer program)?

*STRIP BACK- After you’ve re-evaluated and prioritized, create a new schedule that suits your family.  Listen to the cues of your child, (and yourself).  Is it stressful, time-consuming, expensive or sapping your energy?  Has it become a huge inconvenience and unfair to the rest of your family?

Right now is a perfect time, before school starts, to take a deep look at all the therapies and activities your child and siblings are involved in.  Are these programs enhancing their growth?  How much time are you spending in the car, commuting all over town for these therapies and other programs? Sometimes, it’s just TOO MUCH for you child and other family members.  Consider scaling back, and opt to incorporate learning activities at home. Ask your child’s therapists for suggestions on how to do this.  With their help, create learning (TEACCH) activities that can be done at home.  It really helped me to achieve better balance, when I scaled back, and incorporated a few of the TEACCH activities along with natural occurring jobs around the house, instead of driving all over town each day to therapies.  🙂

TEACCH (Treatment and Education of Autistic and Communication is an evidence-based service, training, and research program for individuals of all ages and skill levels with autism spectrum disorders.  

Here are some TEACCH bins we do in our home with Nick…..

Task Strip with a highly preferred reward to work towards. Nick picks out a reward  from his PECs (Picture Exchange Communication book) or AAC (Augmentative and Alternative Communication Device).  He usually chooses a Sprite….

Task Two Strip

Nick get’s handed the #1 and matches to the bin and completes the activity.  Once this is done he puts the #1 on the green task strip.  This is repeated for all four bins. The activities range from sorting, matching, assembly, folding, and fine motor.  Bins can be customized to fit the needs of an individual child.  These are just a few of many Nick does.  Be sure to mix in some that have a high success rate, with more challenging activities suitable for your child:

bins 1 and 2   Bins 3 and 4

Naturally occurring activities can also be added around the house throughout the day.  Examples include unloading the dishwasher, garbage/recycling, laundry, putting groceries away, cleaning counters, vacuuming, and gardening.

Nick watering plants

All these activities help to build new skill sets, confidence and independence.  The TEACCH activities are also implemented by respite caregivers, which we’ve hired with the help of state waiver funding.  These caregivers work on goals both in the home and out in the community. Respite workers can also help take your child to afterschool activities such as therapy, Special Olympics/ sports or swim lessons and social groups. Having respite care or hiring a babysitter, allows a parent to get a break and take time to get out and enjoy their own life.

It’s so easy to get bombarded with advice on treatments, diets, therapies and recreational programs related to special needs.  As a parent, you need to decide what is useful and stop feeling guilty about doing everything single therapy and program to help your child.  Do your research, weigh the pro’s and cons, and decide what works best for your child and family.  Don’t allow those guilty thoughts to rob your peace, or make you doubt your parenting skills.

relax boardwalk

That’s what is in my noggin this week.

~Teresa

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Posted in Behavior/ ABA, Dual Diagnosis Down syndrome and autism, IEP (Indivdualized Education Plan)

Blog #179~Down syndrome and Autism-Unlocking Your Child’s Potential

Blog #179~Down syndrome and Autism-Unlocking Your Child’s Potential

When your child has a dual diagnosis of Down syndrome and autism, the game changes.  Speech may be limited or even non-verbal, which may lead to behavior problems.  Sensory issues can be extreme and interfere with social interactions and learning.  My son, Nick is 23 years old and has a dual diagnosis of Down syndrome and autism.  His speech is limited, and he is a sensory seeker.  Over the years, with the help of some amazing teachers, therapists, and autism behaviorist specialists, he has developed skills which have allowed him to contribute both working in his adult day program, and here at home.

So how do you find the key to unlock your child’s potential?

padlock-unlocked_318-40940The key lies in identifying your child’s strengths, and working to build upon them.  First of all, just because my son’s speech is limited doesn’t mean he can’t communicate.  One of Nick’s assets is his receptive language, which is the ability to understand information.  Many of his goals in his IEP (Individualized Education Plan), were planned around using this strength when he was in school.  Nick was able to develop skills to become more independent in self-help, and other jobs both at home and school.  These skills were enhanced by using educational materials and supports that were written into his IEP.  Such materials included a PECS book (Picture Exchange Communication System) with training for staff, parents and child, Augmentative Alternative Communication (AAC) devices,  task strips, social stories, a picture schedule, video modeling, and a reward system.  All of these supports helped Nick to navigate his routine and built upon his functional and independent livings skills.

APE swimming 006 (4)

Besides his receptive language, Nick’s other strengths are his desire to please and take the initiative.  He is a taskmaster!  When Nick was younger, his teachers pointed out how good he was at matching.  A lot of his goals were structured around this.  Nick has always had a keen eye, and notices where everything goes around the house.  Anytime the batteries died on one of his musical toys, he would go to the kitchen drawer, pull out the screwdriver and hand it to me with the toy.  As he grew older, I recall him nudging his older brother over to help unload the dishwasher.  He knew which cabinet every single plate, cup, pot, pan and utensil were stored.  Shortly thereafter, I let him take over the chore (with no complaints from his older brother, Hank). 🙂

Nick still takes great pride in unloading the dishwasher today!

Nick dishwasher two

Here are some other ways the taskmaster takes initiative:

Nick getting out ingredients and utensils for his salad….

Nick dinner prep

As soon as he saw the pan of water on the stove, he went to the pantry and pulled out the ingredients to make pasta…..

Nick past cooking

Using his strength of taking the initiative, we have built upon this to create other jobs both at home and in the community.  When he was in school, his teachers recognized his sensory seeking needs and channeled them by doing “heavy work”.  An occupational therapist can assist with ideas to implement a sensory diet into your child’s routine. Nick likes to throw and swipe things (and still does).  It has helped to find activities with heavy work or that mimic this sensory need.

Here are a few of the jobs that does:

*Recycling (replacement behavior for throwing)

*Can crushing (sensory and motor activity and replacement behavior for throwing)

*Carry laundry basket and load washing machine (heavy work/ organizing)

*Put away groceries (organizing activity)

*Empty Dishwasher (organizing and sensory activity)

*Cleaning/ wiping down countertops and windows (organizing activity)

*Vacuuming (heavy work which is calming)

Nick working at a residence facility in high school….

Nick vacumming_Tabor Hills (3)

Nick doing volunteer work at GiGi’s playhouse with in his current adult day program…

nick-cleaning-gigis

There is so much your child can learn when you identify their strengths and unique talents.  When you find what motivates your child, you can build and expand upon it.  Work with your child’s IEP team, therapists and autism specialist, to identify those areas.  Then together as a team, create a plan with specific and measurable goals, that will enable your child to grow and be successful.  Unlock your child’s potential, and watch them soar!  That’s what is in my noggin this week. 🙂

~Teresa

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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

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Instagram #nickdsautism

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Posted in Autism, Dual Diagnosis Down syndrome and autism, Fun Side of Nick, Recreation/Leisure and Special Needs

Blog #177~Nick’s Vacation Fun 2017

Blog #177~Nick’s Vacation Fun 2017

Each year we take a vacation to the shores of the Outer Banks in North Carolina.  This summer we added an extra leg to the trip, spending the first week in Virginia.  Nick’s aunt and uncle own property with old tobacco barns they’ve renovated into beautiful living spaces.  This area is located above the banks of the James River.  My son Nick is 23 years old and has Down syndrome and autism.  The quiet country life seemed to agree with him.

Nick Swing VA

Nick enjoyed his time in Virginia, especially the rides on the John Deer “Gator”. 🙂  The renovated tobacco barns were made into living spaces.  They were very accommodating and cozy.

Gator ride

Nick got very relaxed as we did some kayaking on the James River….

Kayaking

Kayaking the James River was very soothing for Nick…..

James River

Gator tour of property with 100+ year old barns

barn va

One of the highlights for me was touring Thomas Jefferson’s estate, Monticello.  Thomas Jefferson has always been my favorite president.  He was a visionary, who had big dreams to expand our country which included exploring science, architecture, paleontology and much more.  Monticello was the center of Jefferson’s world.  When touring his home and plantation high on the mountain top, you can feel the inspiration of his timeless ideas.

Monticello

The second part of the vacation was our annual trip to the Outer Banks, NC (OBX).  We shifted gears from country living to beach life.  When you see these signs, it’s time to relax and turn the knob to Bob, 93.7 FM.  Destination, Duck, NC!

OBX signs

Nick enjoyed his travel companion, Cali who decided to make herself comfortable on his lap on the road trip from Virginia to OBX 🙂

Nick and Cali OBX

Our gracious hosts, Uncle Ron and Aunt Ali also have a beautiful home in OBX.  Nick feels very comfortable staying there for several years.  Cali, their dog seems to be very content as well…..

Ron and Ali OBX

Our backyard view for the week…

OBX crows nest

Nick had a great time, and we even got him on the beach on several occasions.  He’s not a big fan of the texture of sand and heat, due to the sensory issues associated with having autism.  But we pushed his boundaries and he did great sitting under the umbrella with his legs propped up.

Beaching it with his bro…..

Nick and Bro on beach

The house also has a pool that Nick splashed around in each day….

Nick pool obx 2017

Happy hour at the crow’s nest with his “stim” of choice, the tappers!

nick crows nest 2017

Summer 2017 vacation was a great success!  There was not a single fire alarm pull or call button pushed while on the airplane.  Nick stayed on an even keel with his behavior.  The only outburst occurred on my birthday at the Aqua Restaurant, located on the sound side of the island.  Towards the end of our meal, Nick was done and stood up.  His Dad tried to get him to sit back down, but he wanted no part of it.  As Al motioned him back to the chair, Nick yelled “God Dam#*it”, which echoed out, silencing the entire dining area. There was a notable pause with all eyes glaring at our table.  Autism spoke loudly in that moment.  Fortunately, things did not escalate, and we allowed him to remain standing as we finished dessert and settled up the tab.

It was a fun and relaxing two weeks in Virginia and the Outer Banks.  The success of such a trip comes with using picture icons to help him navigate his days and anticipating possible triggers of Nick’s behavior.  We watch his body language for things that might spark a meltdown, and cut it off at the pass or redirect quickly, before things escalate.  Yes, we pushed the boundaries by trying new things like kayaking, riding on the gator on a property tour, and longer & more frequent trips to the beach.  But each was met with praise and rewards (Sprite, iPad, salami) along with elbow bumps.  And don’t forget the tappers, or stim of choice that your child needs to regulate thier sensory needs,

Keep pushing the boundaries with your child, and don’t limit what you think they can handle on a vacation.  It’s worth a try for your child and the whole family.

OBX View

As I post this final picture, I treasure the new memories made on this vacation.  And as Ali told us before departing, “Try to stay in beach mode as long as you can”.  That’s what is in my noggin this week. 🙂

~Teresa

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Posted in Adult Day Programs for Special Needs, Autism, Down syndrome, Dual Diagnosis Down syndrome and autism

Nick~Spring Update

Nick~Spring Update

dandelion two

At last, spring has arrived in Chicago.  Here’s what Nick has been up to this spring at his adult day program.  My son is 23 years old and has Down syndrome and autism.  Each day he engages in a variety of activities at this program.

Nick continues to have both in-house and community vocational jobs.  These include stocking shelves at a local food pantry, stuffing church bulletins and cleaning at GiGi’s playhouse.  He recently got a paid job in-house, crushing and recycling cans.

nick-vacumme-gigis

Other community activities in Nick’s day program include visits to the library, shopping, and local parks.  In house, the adult day program has many enrichment activities such as art, work bins, cooking, fitness, and gardening.  They have taken the carrot and broccoli pods which were started indoors this winter, and planted them outside.  His group also bought and spread mulch on the outdoor beds.

In cooking, they’ve made shepherds pie, fruit pizza, hot dogs & sloppy joes with fries, and biscuits with gravy.  They have so much fun playing bingo and having holiday theme parties.  For St. Patrick’s Day they made shamrock shakes, and for Cinco de Mayo they made burrito bowls.  Recently, the moms were invited to his room for a Mother’s Day tea.  Nick was very excited to have me visit.

Mother's Day Tea

Outside of Nick’s adult day program, he keeps busy with his respite workers.  He enjoys going to local parks,  the library, movie theatre and restaurants.  He’s a regular at Culvers and CiCi’s Pizza each week.  We are very fortunate to have such dedicated caregivers with Lara, Jodi and Kelsey, who he loves very much.

I’ve painted a pretty and serene picture of Nick’s world this spring.  But it’s not all dainty flowers and colorful rainbows.  There are quite a few dandelions scattered in the mix.

dandelions

He continues to challenge us all with undesirable behaviors, like button pushing, throwing objects, blowing snot rockets and wiping them all over the place along with a lot of tapping and stimming.

Nick got a hold of a gargantuan tapper to stim on last week 🙂

Nick gargantuan tapper

There have been some milk thistles popping into the picture as well.  Last week he managed to add to his tally of fire alarm pulls, getting one at his day program.  So the alarm count stands today at 44 pulls.  OUCH!

milk thistle

The mix of cold weather and rain has led to some serious cabin fever this spring.  Here’s to warmer weather and getting my “one man wrecking crew” outdoors.  I’m grateful that Nick has a wonderful day program to go to, along with awesome respite workers that he loves.  He has a fulfilling life, and I get some peaceful time to myself.   Cheers to an abundance of flowers this spring, with fewer thorns.

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

~Teresa

Follow Nick:

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Instagram #nickdsautism

Twitter @tjunnerstall