Posted in Autism, Down syndrome, Recreation/Leisure and Special Needs

Blog #198~ Nick’s Adventures in Vail

Blog #198~Nick’s Adventures in Vail

Last week, Nick celebrated his 24th birthday in Vail, Colorado.  Nick has Down syndrome and autism, but this doesn’t limit his ability to enjoy life to its fullest.  My son loves the Disney movie, Snow Dogs.  We made reservations for a dog sledding tour with Mountain Mushers, located in Beaver Creek.  Upon our arrival, the dogs were loud and super excited.  They barked and howled expressing their eagerness to run.  Our guide and musher, Cameron led Nick to Sara, an affectionate dog that would be on our team.  Normally Nick gets shy around dogs but he took a liking to sweet Sara.

Nick, Cameron and Sara…..

Nick petting sara dog

The dogs are a mix of Alaskan Huskies, all happy, friendly and truly loved by the staff.  They were certainly ready to race, as they jumped with eagerness.

Here’s Nick and I, with his Dad posing briefly in the musher position, before we started the tour…..

Sled pic

Our musher, Cameron made sure Nick was comfortable.  Before takeoff, he yelled, “Hike” and the dogs took off quickly.  Nick loved it, as he is such a thrill seeker.  Anytime we ride on a rollercoaster and it ends, he always signs “more”.  So, I knew dog sledding would be right up his alley. Once the tour starts, the dogs quiet down and get into a rhythm.  At this point you hear their paws hitting the ground in unison, and the sound of the snow crunching under the runners.  Mountain Mushers runs the tour on private property, with many hills.  We flew up and up and down them, at a rapid pace.  On occasion we would hit bumps on the trail.  Nick loved that part, laughing and saying “Oh $h*t” each time 🙂

dogs in motion

There is something about being in the mountains amongst the Aspen and Pine trees, that is both peaceful and reverent.  The views are spectacular, and it was interesting to see the large bear claw marks scraping up several Aspen trees.  Halfway through the tour, the dogs get a rest.  The staff provided us with a treat of hot chocolate and homemade pumpkin bread.

dogs resting

One of the dogs on our team is blind, and he is paired with his brother, who helps to guide him.  Even though this dog couldn’t see, he was right in the mix.  Each time our musher called him by name, the blind dog leaped in the air kicking up one leg in elation.  It was an amazing experience that Nick and I will never forget.  He’s been watching the movie Snow Dogs everyday since.

Vail is beautiful, and the views are serene.  Nick enjoyed being with his aunt, uncle and our friends last week.  He got such a kick out of being in the hot tub, while snow flakes flew around us.  Nick smiled, blinking them off of his eyelashes as the blustery breeze gave us a jolt of coolness while we soaked in the steamy bubbles.

We celebrated Nick’s birthday with pasta and his favorite, chocolate cake!

Nick 24 Birthday cake

We wrapped up the week, with a trip to the Continental Divide at Tennessee Pass.  The resort overlooks the Sawatch Mountains, with many groomed trails to ski, hike and snow shoe, along with other Nordic adventures.  Our group took the one mile trail via snow shoeing, cross-country skiing or riding up in a snow mobile.

Nick totally loved riding up the hill, zoom-zoom……

snow mobile

At the top of the hill, we took in a spectacular view, watching the sunset with hues that painted a beautiful canvas in the sky…..

Continental Divide Sunset

Tennessee Pass provides a unique, fine dining experience inside a yurt.  A yurt is a circular domed tent of skins or felt stretched over a collapsible lattice framework and used by pastoral peoples of inner Asia.  The resort offers yurts both for dining and sleeping.  The yurt is rustic and toasty inside, with an exceptional four course dining menu.

Tennessee Pass Cookhouse Yurt……

Yurt

Dining in the yurt…..

After dinner, we took a fast pace ride down the one mile trail back to the Nordic center.  The stars and constellations shined vividly in the night sky.  Nick giggled with delight as we flew swiftly through the darkness, on the snow mobile.  It was peaceful and exhilarating all at once.

yurt at night

Our vacation and adventures in Vail were remarkable.  I feel blessed to have the opportunity for these unique experiences, and seeing the joy through Nick’s eyes.  That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

*Facebook and Pinterest @Down Syndrome With A Slice Of Autism

*Instagram #nickdsautism (I will be posting some video footage of our dog sledding experience, here this week).

*Twitter @tjunnerstall

 

 

Posted in Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism, Government/Legal Matters Related to Special Needs, IEP (Indivdualized Education Plan)

Blog #195~ Being a Firestarter

Blog #195~ Being a Firestarter

What is the difference between those bold enough to pursue their dreams and others who never get comfortable enough to ignite their lives? The doers are “Firestarters” and, because of them, the world is a much different, and often, better place.

Fire

Are you looking for a way to ignite your life and dreams?  Firestarters-How Innovators, Instigators and Initiators Can Inspire You To Ignite Your Own Life,  is a new book released last week; that will help you to do so. As I wrote in last week’s Blog #194, Firestarters are innovators, instigators and initiators that get things accomplished.  Recently I had the opportunity to interview one of the co-authors of this new and powerful book, Paul Eder along with a featured Firestarter, David Egan who is an advocate for special needs.  This week, I am sharing more on these interviews about being FIRESTARTERS!

Firestarters

David Egan is the first person with an intellectual disability to be awarded a Joseph P. Kennedy JR. Public Policy Fellowship, he made history by working on Capitol Hill with the Ways and Means Social Security Subcommittee.  David Egan, born with Down syndrome, is a trailblazer for others who have intellectual disabilities.

David Egan-Advocate Photo

He believes in promoting the idea of people with disabilities having special talents.  David states that people with intellectual disabilities should be included in as many sectors of our society as possible, and being featured as a leader in this book makes made him proud.  The most important part of his advocacy is to demonstrate that people like himself are Valued, Able, and Ready to work.

David Egan Work Photo         David Egan swimming

“We are citizens that matter and we belong in our community.” -David Egan

David-Egan-Capitol-Hill-2011

“People with intellectual disabilities do not want pity; we want respect, inclusion, and the opportunity to reach our full potential like any other citizen.” -David Egan

Paul Eder is the co-author of Firestarters along with Raoul Davis JR. and Kathy Palokoff.  From early on, Paul Eder wanted the book to be inclusive.  He has a 6-year old son, Brady who has Down syndrome and believes his potential is limitless.  Paul says that a Firestarter is partially defined by the impact you have on others. His son, Brady has certainly impacted his life.  Paul hopes his son’s achievements go beyond and push the boundaries like David Egan.

I asked Paul how he plans to use the concept of Firestarters to help navigate his son through school and working with IEP team members? 

Paul said that, “The IEP (Individualized Education Plan),  generally taps into a number of the concepts we discuss in the Firestarters book, but the section on Accelerants is very relevant. Accelerants include: Mission-focused behavior, Cooperation, Constructive competition, sweat equity (working hard), and support seeking.”

Paul goes on to further state this about IEP’s:

“An IEP certainly focuses on the mission surrounding your child’s educational path. From a cooperation perspective, the IEP defies all the supporting partnerships that are necessary to propel his success.  All of the IEP goals are measurable, which gives it a competitive flair. We want the goals to be challenging but not impossible, and we want to be able to compare his progress against some standard of success (e.g., grade-level expectations). My son has a daily behavior log where his social and academic behaviors are tracked. From this sheet, we are able to tell whether he is putting in his full effort and devoting the sweat equity needed to learn. Support-seeking is an obvious one.”

“The IEP team is a support structure in itself.  As parents, we can’t be afraid to ask the questions needed of the team and push for the supports required to ensure his success.” -Paul Eder

I asked Paul how can someone support the Firestarters in their lives, especially those with potential but who may have special needs?

In the book we define 4 types of supporters based on the research we conducted:

1.Nurturers listen and help you follow through with your ideas.
2.Motivators get you moving. They are people like Tony Robbins who exude an energy that make you want to be a better person.
3.Illuminators are the teachers in your life who help you grow socially and intellectually.
4.Protectors are the people who defend you when others won’t.

A FIRESTARTER, seeks support to fan their flame, and finds ways to limit the influence of Extinguishers.

As we begin 2018, what do you want to accomplish?  Find the people who can support you and don’t allow the extinguishers to have power over your life.  We’ve all met FIRESTARTERS, and seen what they’ve accomplished.  They create, disrupt and start things.  The book FIRESTARTERS  interviewed successful entrepreneurs, CEO’s, organizational leaders, advocates and forward thinkers from a variety of professions to find out what makes them tick.  There are step by step guides to teach you how to join the ranks in whatever you want to accomplish.

For more information about FIRESTARTERS click here: https://goo.gl/4VmHKo

Thank you to Paul Eder and David Egan for sharing your inspiring stories of being FIRESTARTERS, who make the world a better place!  That’s what is in my noggin this week.

~Teresa 🙂 

 

 

 

 

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

Fall Update: Nick DS-ASD

Fall Update: Nick DS-ASD

Time flies when you are having fun, and Nick is having a blast this fall.  My son, Nick is 23 years old and has a dual diagnosis of Down syndrome and autism.  He attends an adult day program which provides a wide variety of activities.  Community outings this fall included volunteer jobs, bowling, visits to local parks, fire station, grocery shopping and going out to eat.  His group also works in-house doing gardening, cooking, skill along with communication building using their Augmentative Alternative Communication (AAC) devices.  Nick uses a program called Touch Chat on an iPad for communication.

Nick cooking at his day program…..

Nick cooking meatballs

Nick was very excited to visit the fire station 🙂  He wasted no time buckling up right away….

Nick fire truck

Outside his adult day program, Nick enjoys community visits to the library, mall, parks, shopping, the movies and eating out.  He continues to have “date nights” meeting up with his buddy, Christopher.  We are very grateful to have such caring respite workers, to take him out several times each week.

Fun at the Halloween Store…..

Nick crown

Buddy Up Tennis, see Blog #190 to read all about it @https://nickspecialneeds.com/?s=buddy+up

Nick buddy tennis 2

Nick relaxing at the library.  Make yourself at home there, Big Guy….. 🙂

Nick library

That’s Nick’s world and update for this fall.  I would like to take a moment to thank our respite workers, Lara, Jodi and Kelsey for all they do for Nick and our family.  My son has a full and rich life, and we are grateful to have these supports in place to make this possible.

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

~Teresa 🙂

Want to see more pictures of Nick?  We have a lot more on social media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

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

Blog #191~Challenging Behaviors: Why is My Child Acting This Way?

Blog #191~Challenging Behaviors: Why is My Child Acting This Way?

behavior

Parents raising a child with a dual diagnosis of Down syndrome and autism experience challenging behaviors from their children.  A long holiday weekend can heighten these behaviors with changes in routine and family gatherings.  A child may feel lost in the mix and in need of attention.  They may also experience sensory overload.  These can be shown in a variety of ways, such as increased self-stimulatory/ repetitive behaviors (hand flapping, tapping, turning on water faucets, pushing buttons, shutting or slamming doors),  self-injury (head banging, biting, slapping self), attacking others and property destruction to name a few.  This week I want to focus on WHY a child may be acting out.  When you understand why this might be happening, you can put a better plan in place, in order to support your child.

The first step is to determine what the behavior means.  All behavior is communicating something.  This is where you have to do some detective work.

Detective-clipart-animation-free-images-2

Keeping a log of behaviors is a great tool to determine what purpose this is serving your child.  It’s helpful to use a Functional Behavior Assessment Form, such as this to gather data:

Functional Behavior Assessment

Data collection will assist you at home and the school IEP team on the who, what, where, when and why’s of the behavior.  What is this behavior trying to communicate?  What need is being expressed through these behaviors?  Is there a pattern of when these behaviors are occurring and what is triggering them?

Ultimately the Functional Behavior Assessment, (also known as a FBA) will reveal what the purpose this behavior serves for the child.  

Let’s put this to use with two behaviors often associated with a dual diagnosis of Down syndrome and autism:

*Self-stimulatory or Repetitive Behaviors

*Injurious Behaviors

In the case of self-stimulatory or repetitive behaviors, a child may:

  1. Need more stimulation
  2. Be trying to masking sensory overload
  3. Be upset, anxious or not busy enough

Observe your child, and maybe even try the behavior yourself in order to get an idea of why they are attracted to it.  Repetitive behaviors are often sensory based.  They help to calm and organize the nervous system by releasing stress chemicals.  This in turn can help to reduce anxiety.

My son, Nick is 23 years old and has a dual diagnosis of Down syndrome and autism.  He often uses tappers to help regulate his sensory needs.  Here he is at his adult day program:

Nick tappers AID

Bottom line, it’s important to respect these sensory needs and allow your child to have this time during the day.  Find a balance in building in these sensory breaks without letting them take over completely.  Self-stimulatory and repetitive behaviors should not  get in the way of learning, or in work jobs.  Keep in mind, especially around the holidays as you get busy with wrapping presents, cooking and cleaning the house that your child may be bored and feeling ignored.  It is necessary to provide some structured activities to reduce these behaviors.  I like to give my son jobs so he feels helpful, and rewarded for his appropriate behavior with lots of praise.  While I was getting the house ready for Thanksgiving, I had Nick vacuum for me, a job he enjoys doing.  It provides him with good sensory input using heavy work, which can be calming…

Nick vacumme thanksgiving

In the case of injurious behaviors a child may:

  1. Bang head, bite, slap themselves, attack others or destroy property
  2. Be frustrated, angry, experiencing discomfort, pain or sensory overload
  3. Communicate escaping and avoiding an unwanted task or event

Again, the Functional Behavior Assessment chart can help to determine if there is a certain activity, event or time of day which causes these behaviors to escalate.  As the detective, you want to uncover these triggers.  When you figure out these triggers, you can put supports in place to in essence, cut it off at the pass before your child goes into a full-blown meltdown.

Example- Family trip to the shopping mall:

The stimulus overload, especially around the holidays with added crowds,  more kiosks, noises, lights, and may be too much for a child with autism.  You many need to keep the trip short and provide visuals supports to help your child understand the sequence of events that will happen.

Task Strip for shopping mall trip….

task strip mall

Along with a visual schedule, you want to keep your eye open to any distress signals the child may exhibit in their body language.  My son will tend to pinch his cheeks when he is upset or stomp and say, “I’m mad”.  These signs are a cue to back off and lower the demands you are placing on your child.

In summation, you can support your child and prevent these injurious behaviors by:

  1. Recognizing distress signals and re-direct your child.
  2. Lowering or pulling away the demands that have been placed and causing your child to feel overwhelmed.
  3. Providing visual supports with task strips so they know the sequence of events.
  4. Teaching alternative ways to escape and unwanted situation by using visual supports with icons such as, “Stop” “Help” “All Done” and “I Need A Break”:Break Icon
  5. Practice teaching appropriate ways to protest separately in mild stress situations. Use the icons above either with visuals or on a communication device using lots of praise.

Understanding the function of your child’s behavior and creating an environment to support them will lead to success in both home, school and in the community.  If your child has challenging behaviors, seek the help of a trained autism behavior specialist.  You should request that a Functional Behavior Analysis (FBA) be done.  Once this data is collected, a Behavior Support Plan (also known as a BSP) can be created and put in the IEP.   You and the school IEP team can brainstorm on what supports to put in place to help your child better succeed and express themselves more appropriately.

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 @tjunnnerstall

 

 

 

 

 

Posted in Down syndrome, Dual Diagnosis Down syndrome and autism, Recreation/Leisure and Special Needs

Blog #190~Nick & Buddy Up Tennis

Blog #190~ Nick & Buddy Up Tennis

I took my son Nick, to the Buddy Up Tennis program over the weekend.  Buddy Up Tennis is a high-energy, adaptive tennis and fitness program for children and young adults with Down syndrome.  They provide fun and rewarding 90-minute clinics on a weekly basis.  The program currently serves 550 individuals ages five to young adults with Down syndrome across the country.  Honestly, I wasn’t sure how cooperative Nick would be given that he has a dual diagnosis of Down syndrome and autism.  I am happy to report that he participated and followed directions fairly well, for his first time out.

Nick buddy tennis 2

This 90 minute Buddy Up Tennis-Naperville clinic, is held at Five Star Tennis Center.  Athletes are paired with a buddy and start off with a warm up.  Each participant gets to toss the dice and perform a variety of calisthenic exercises like toe touches, push-ups, jumping jacks and sit ups.  Nick needed some prompting on these.  I had to laugh when everyone got down to do push ups and Nick was still standing.  Then about the time he got down on all fours, the rest of the group was up doing jumping jacks. 🙂

fitness dice                Buddy Up Tennis Logo

After the warm-up, the participants break up into groups.  The younger kids use modified equipment and balls on a separate court.  The teens and young adults move to circuit training.  Stations are set up focus on balance, agility, hand-eye coordination and upper body movements that mimic tennis strokes and serves.

Nick navigated each station with prompts, praise and elbow bumps, from his buddies and coaches.  He moved at a slower pace than his peers, and there were a few stations he was less interested in.  But overall, did a good job!

Nick Buddy Tennis balance

After circuit training, the athletes worked on volleys and ground strokes.  Nick needed more prompting and hand over hand assistance, to move through these drills.  But he remained patient and compliant.  It really helped to have a peer partner and the coaches cheering him on, as well as the other athletes modeling appropriate behavior.

Nick buddy tennis

Towards the end of the clinic, Nick did begin to lose interest in hitting tennis balls.  I grabbed a ball hopper, and he and his peer buddy collected balls.  Nick is good at putting things away, so this kept him perked him up and engaged.  For the last 10 minutes, all the groups come together, and play a few rounds of duck, duck, goose. Then, the coaches present certificates to the top awesome athletes for that week.  Nick was awarded one of these for working hard.  Yay Big Guy! 🙂

Overall, I feel the experience was a success for Nick.  I was a little nervous going in, because he can be loud and distracting with the stimming behaviors associated with autism.  However, these behaviors were quite diminished during the clinic.  It reminded me of when Nick was in a full inclusion classroom, when we first moved into the Chicago area, 15 years ago.  Positive peer role models is one of the benefits of placing your child in full inclusion classroom.  When Nick was in a full inclusion classroom, the loud noises, tapping and other stimming decreased.  That alone, makes it worthwhile to enroll him in the next session coming up in January.

I plan on making a few visuals of the calisthenic exercises, circuit stations and sequence of moving through the drills will help with transitioning.  For individuals with autism, it helps to have a picture schedule to assist them in understanding what is expected of them.  If they can see it, they can better understand it.

Buddy Up Tennis is a wonderful program, and I’d like to thank the coaches and volunteers for the opportunity to have Nick be a part of group.  For more information about Buddy Up Tennis, visit their website at http://buddyuptennis.com/

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

~Teresa

Follow Nick:

Facebook & Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

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

Follow Nick:

Down Syndrome With A Slice Of Autism on Facebook and Pinterest

#nickdsautism on Instagram

@tjunnerstall on Twitter

 

 

 

 

 

 

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

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

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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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 Autism, Down syndrome, Recreation/Leisure and Special Needs

Blog #176~ Special Needs Summer Recreation Programs

Blog #176~Special Needs Summer Recreation Programs

The heat is on!  Are you looking into programs for your child with special needs this summer?  There are many types of programs available including camps, athletic and leisure programs.  A great place to start is to contact your local park district to see if they offer any special recreation programs.  For programs in here in Illinois click on this link: http:// www.specialrecreation.org

Here are some links for special needs summer programs:

Special Olympics- http:// www.specialolympics.org

Buddy Up Tennis- http:// www.buddyuptennis.com

Top Soccer- http://www.topsoccer.us

I Can Ride Bike Camps- https://www.icanshine.org

Easter Seals- http://www.easterseals.com

Gi Gi’s Playhouse- https://www.gigisplayhouse.org

American Camp Association- https://acacamps.org

Very Well has a list of Inclusive Sports Programs- https://www.verywell.com/special-needs-sports-programs-3106922

Friendship Circle List of Camps- http://www.friendshipcircle.org/blog/2013/02/13/25-summer-camps-for-individuals-with-special-needs/

Diveheart Scuba program- http://diveheart.org

Diveheart 2013 336

My son Nick (pictured above), is 23 years old and has Down syndrome and autism.  He has participated in many of these programs over the years.  These include Special Olympics, Challenger Baseball League, Top Soccer, swim lessons, Diveheart and I Can Shine Bike Camp.  During the summer months he also attended ESY (Extended Summer Year) summer school.  These programs helped him to learn new skills, have a structured routine, and develop friendships.

Nick at ESY Summer School…..

 

I Can Shine Bike Camp….

photo (124)

Many of these programs are available for children with special needs throughout the U.S.  My son Nick had great experiences in participating in these programs.  If you know of a program you would like to share, please contact me.  I’m always updating my resource list on this website and sharing them with other support groups.  Here’s to a great summer 🙂

That’s what is in my noggin this week!

~Teresa 🙂

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