Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Fun Side of Nick

DS-ASD~Nick’s World Update

DS-ASD~Nick’s World Update

There are lots of cool things going on in Nick’s world right now.  My son, Nick just celebrated his 25th birthday last week.  He has a dual diagnosis of Down syndrome and autism (DS-ASD).

Nick and his Dad celebrating their birthdays….

 

A week earlier, Nick enjoyed dog sledding in Vail.  This was our second time to do this with Mountain Mushers, I highly recommend it.  I  wrote about our vacation last Monday.

If you missed last week’s blog about it, click here to read all about it: https://nickspecialneeds.com/?s=blog+%23229

Nick dog sled 2019

I am excited to share that, I’ve finished my memoir about the journey of raising Nick!  My editor just sent back revisions that will be keeping me busy.  So, for the next month or so, I will be highlighting some of my favorite, past blog posts.  I’ll plan on sharing both light-hearted and informative pieces.

This week, I am sharing Blog #100 which includes 20 tidbits about Nick.  Click here to read:

https://nickspecialneeds.com/2014/06/23/blog-10020-tidbits-about-nick/

That’s what is in my noggin this week.  Be sure and follow Nick on social media where you will find lots more pictures and videos of Nick’s world.  The links are listed below.

~Teresa 🙂

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

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

Blog #229~DS-ASD Winter Update

Blog #229~DS-ASD Winter Update

Chicago winter 2019

This winter weather has been bitter and harsh, here in Chicago.  Fortunately, we missed the plummeting temperatures last week, while vacationing in Vail, Colorado.  My son, Nick is 24 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD).  Here’s an update on what Nick’s been up to this winter and the highlights of our trip to Vail.

The weather in Vail was mild, with temperatures in the 35-40 degree range and plenty of sunshine.  There is something to be said about sunlight and how it can elevate your mood.  The clear blue skies, warm sun, fresh air, and beautiful mountain views, can do wonders for the soul.

Vail sunset 2019

Nick enjoyed his time with our friends in Vail.  The village is always a fun place to visit.  Here’s Nick at lunch and with his Dad, Al :)…..

 

The highlight of the week, for Nick was dog sledding.  This is the second year we’ve done this with Mountain Mushers, who offer the best dog sledding rides in the Vail Valley.  Nick was happy to see his buddy, Cameron who was our dog sled musher last year.  He always gets such a kick seeing all the happy dogs, who bark with excitement as the sleds loaded up.

All bundled up in the sled and ready to go, and guess what, he actually kept his hat and gloves on this time.  Yay Nick! 🙂

 

The scenic trail was packed with alot more snow this year, making the ride faster. His favorite part is when the sled goes over the bumps and flies down the hills. Nick is a thrill seeker, who always signs “more” when a roller coaster ride is over.  He also loves the Disney movie Snow Dogs, so this was a perfect blend of his favorite things.  Towards the end of the ride, his Dad got to try his hand at mushing.  Check out the Facebook, Instagram and Twitter links below to see videos of them dog sledding in action all this week. 🙂 

Today it’s a balmy 50 degrees here in Chicago, and Nick has returned to his adult developmental training day program.  It’s hard to believe the turn around in temperatures……

Chicago temp difference

As I’ve mentioned in previous blog posts, Nick attends a day program that he truly enjoys.  The adult developmental training program curriculum includes functional and academic work activities, crafts, exercise, cooking, entertainment, and community outings.  The staff reports that Nick has so much potential and does awesome at the learning centers and work choices.  They have a lot of fun, especially over the holidays. Activities included a big Christmas lunch, wearing ugly sweaters, listening to a local high school choir and making wreaths, gingerbread houses and pillows.

Here’ s a no sew pillow that Nick made…..

nick pillow

If you look closely in the picture above, you might notice a stop icon on the dishwasher.  There are many of these stop signs on the start buttons around our house.  Individuals with a diagnosis of autism can benefit from the use of icons, to better guide their days.  Nick has a thing for pushing buttons and fire alarms.  His behavior support plan (BSP) addresses the fire alarm pulling.  Twice each day, the staff at his day program take him on a walk down the hallways.  They encourage and cue him to “keep walking” with “hands to self”.  Before these walks, the staff reads his social story that contains pictures of how to  navigate these hall walks.  Upon successful completion, Nick earns a reward.

Click on this link to learn more about the BSP and his social story: https://nickspecialneeds.com/tag/social-stories/

That wraps up Nick’s world and what he’s been up to this winter.  Navigating a dual diagnosis of  DS-ASD has it’s good and bad days.  Fortunately, the good days now outweigh the bad.  I think it’s both maturity on Nick’s part, along with the wisdom and understanding gained from being his parent.  Big guy has a milestone birthday coming up, I look forward to sharing more with you next Monday!  What is one thing that Nick has taught you over the past 24+ years?  I’d love to hear your feedback. 🙂

That’s what is in my noggin this week.

~Teresa 

Follow Nick on Social Media to see more pics and videos:

Nick head shot in vail

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism and more on dog sledding #mountainmushers

Twitter @tjunnerstall

 

 

 

 

 

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

Blog #228~DS-ASD and Managing Stress as a Parent

Blog #228~DS-ASD and Managing Stress as a Parent

Let’s face it, parenting is stressful with all the demands that are draining on a daily basis.  Raising a child with special needs compounds this even further.  A child with an intellectual or developmental disability such as autism, Down syndrome or a dual diagnosis of Down syndrome and autism (DS-ASD) has even more demands, with living skills, communication and behavior.  These additional needs means the parent has to work even harder.  This can drain parents both physically and emotionally.  I have been dealing with this stress for 24 years, as my son Nick has a dual diagnosis of DS-ASD.  Here is what the stress looks like for a parent of a child with special needs, and some coping mechanisms to combat it.

stress ball

So what does stress look like for parents raising a child with special needs?  Yes, there are the usual demands of running the household, carpools, extra curricular activities and homework of the child and any siblings, but there is much more.  There are often additional therapy and medical appointments on the calendar each week.  Balancing this with all the other activities can be tricky, with someone feeling short-changed in the family.  As I mentioned earlier, a child with special needs may need additional help with daily living skills, communication and behavior management.  If a child is non-verbal or limited in speech, the parent may have to play the guessing game on what the child needs. Deficits in communication skills can often lead to behavior problems.  Maladaptive behaviors may prevent the family from doing activities, attending outside family gatherings and special events together.  One parent may opt to stay home with the child, which over time, may impact the marital relationship.  This also creates a sense of isolation.  All of this can lead to feelings of guilt by the parent, which is one of the biggest internal stressors.

So, how can you manage stress as a parent of a child with DS-ASD or any other intellectual or developmental disability?  Ideally, a parent would schedule a vacation or spa weekend getaway, right?  But what if you don’t have the time or resources for such an elaborate indulgence?

spa getaway

Stress Management in my opinion, begins with mindfulness.  Carving out a few minutes for yourself is key.  Dedicate a time where you can meditate.  Free your mind of all distractions and breathe deeply.  This will allow the heart rate and blood pressure to lower and reduce stress.  Last week, I had lunch with my niece, who recently returned from a spiritual cycling journey and yoga retreat overseas.  We talked about the concept of truly being present in the moment.  The focus can be as simple as being aware of your senses……..

Step outside notice how the sun and warm breeze feel on your face. 

Quiet yourself and enjoy the texture and taste of each bit while you eat.  Take in the aroma and softness against your fingers, as you bite into the pita bread.

Listen and feel how the snow crunches under your feet, take in the cool air and watch as you exhale, seeing your breath rise up into the blue sky.

Sit silently, maybe with your child or pet, feel the softness and listen to your breaths.  Do nothing,  just be as one.

Put on your favorite music.  Focus on the beat, various musical instruments, vocal tones, and harmonies.  Note the meaning of the lyrics, and how it all  feels to your body, mind and soul.

Mindfulness is simply paying attention to the moment that you are in right now, and freeing yourself from worry.  Spending time in the present and focusing on your senses, will allow you to feel less tense.

Pairing mindfulness with gratitude cancels out negative thoughts and worries.  Some days can be challenging and exhausting.  In those times, remind yourself that there is always something or someone to be grateful for.  Showing gratitude can boost morale for  yourself and others.

Taking time to get physical activity in daily can greatly reduces the effects that stress can take on the body.  Even small bursts of exercise, taking a fitness class or a walk around the block can make a difference on how you feel.

It is also important to reach out and share what is going on with friends, family and support groups.  Isolation can be debilitating.  Sharing your struggles can give you a fresh perspective.  There is much to be gained in finding a support group of like-minded individuals who are on a similar path.  In the DS-ASD world, we share success stories, challenges of our child’s delays, and difficult behaviors.  We offer suggestions on how to find a better way to manage the unique challenges associated with our kids and applaud the milestones they hit.  When you share your struggles, (and do so with a dose of humor), you don’t feel alone anymore.  That can be a powerful thing.

Reducing stress doesn’t have to be a big, fancy trip or getaway.  Taking time to exercise mindfulness, gratitude, doing some type of physical activity, and opening yourself up to others, are all simple ways to reduce anxiety.  Allowing people to come in your life for support, will help make difficulties more manageable. Most of all, it’s essential to take some time and find ways to relax your mind. This allows you to re-charge and lessen the degree to which stress can affect the body and mind.

let yourself rest

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

~Teresa

Follow Nick on Social Media:

Facebook and Pinterest at Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

 

 

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

Blog #227~Ditch the New Year’s Resolutions, Here’s a Better Idea

Blog #227~Ditch the New Year’s Resolutions, Here’s a Better Idea

How many times have you made a new year’s resolution and failed to reach it?

new-year-resolutions-825x549

New Year’s resolutions can be daunting and difficult to keep.  This year, I am changing  my tune.  I’ve adopted a new principle personally and for my son, Nick who is 24 years old, and has a dual diagnosis of Down syndrome and autism.  As a fitness professional for 35 years, my job is to motivate, challenge and inspire my clients.  Being fit and healthy isn’t just about eating right and exercising.  To feel your best, you must take care of the mind, body and spirit collectively.  As a parent of a child with special needs, there are more demands, that can wear on you both physically and emotionally.  It is essential to take care of your physical and mental needs to reduce stress and avoid burning yourself out.

mind body spirit

I was listening to a Sirius XM radio interview with Teddi Mellencamp (yes the daughter of John Mellencamp), who is an accountability coach. She gave a better alternative, instead of making new year’s resolutions.  Teddi suggested that you pick 3 things each day that will take care of you personally, and hold yourself accountable.  Write them down, and try it for just 5 days.  These should be centered around helping you to feel better, both physically and emotionally.  By doing this, you begin to create good habits, that leads to confidence, and ultimately changing your lifestyle.

So, I tried it by writing down 2 things each day (3 seemed too much with my busy schedule).  Here are a few things I did:

*Cleaner eating- Replace Sun Chips with almonds and make a chicken wrap with only avocado and lettuce.

*Relax, stretch and be mindful of breathing to relax and calm the body,

*Bump up home workout weights from 10 to 12 pounds.

*Be mindful of the gratitude you receive throughout the day

*Eat an extra piece of fruit.

*Turn off the TV and listen to music I enjoy.

*Be compassionate, smile at a stranger and do random acts of kindness.

*Drink one less cup of coffee and replace with more water.

*Go upstairs, every time I needed something, instead of waiting until things have accumulated.  (This increased my steps significantly).

*Apply one of the principles of Feng Shui.  De-clutter home and clean 8+ years of dust off the high cabinets to increase the flow of chi energy.

*Pray more throughout the day.

*Shop on the outer edges of the grocery store as much as possible. (This is where the nutrient dense, clean and less processed foods are located).

*Respond, and don’t react with anger.

*Meditate for 10 minutes.

I have to say, there is a feeling of personal accomplishment when you hold yourself accountable, and do just 2 things a day to promote personal health both physically and emotionally.

relax

As a fitness professional, here’s what I suggest on how to start a new fitness program.  Don’t set yourself up for failure. Replace the resolution of going to go to the gym 5 days a week with a more reasonable goal. Change the mindset to, doing some physical activity 3-5 days a week.  If you can’t make it to the gym, or you are too tired, then get out and walk or do some calisthenics for just 10 minutes.  Add an extra minute to each workout.  It will all add up, and you will build confidence and feel less guilty.  Break it down to smaller pieces and you will set yourself up for success! 🙂

This got me thinking that maybe I should apply this principle with my son, Nick who has Down syndrome and autism.  Being a parent, we often feel like we are not doing enough to help our child learn and develop skills.  Blame it on housework, our jobs, time schedules/demands, and just plain exhaustion which leads to feelings of guilt.  So, I am going to just focus on one thing that will help my son be more independent each day.

I started yesterday, by encouraging Nick to use his AAC (Augmentative and Alternative Communication) device.  Nick successfully used it to request breakfast and lunch, along with a few other highly preferred rewards he enjoys.

Today, I will continue to focus on Nick using his AAC device by requesting foods and after dinner getting him to ask to take a shower.  These are little steps, but they can add up and enable my son to realize the power of using his voice, via his talker.  I have to constantly remind myself to be disciplined with not only myself, but with my son.  Ultimately, our goal as parents is to guide our children to be as independent as possible and in the process, help them gain more confidence as individuals.

Saying goodbye to New Year’s resolutions, that are often impossible to keep for 365 days, feels liberating.  Shifting the mindset to smaller goals is more realistic.  Little changes add up to building healthy habits.  It will help you feel better physically and emotionally each day.  Plus, it’s attainable and a more reasonable approach to making positive changes.  Breaking things down into smaller pieces is a better way to have success, and build confidence gradually and consistently.  It also allows you to let go of the feelings of guilt that you aren’t doing enough for yourself and your family. I would love to hear your ideas 2-3 things you might add to improve your mind, body and spirit each day!

That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick on Social Media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

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

Blog #226~DS-ASD and Being on Holiday High Alert

Blog #226~DS-ASD and Being on Holiday High Alert

The Christmas tree has been taken down, and all the decorations are packed away.  Now I can let out a sigh of relief.  The three celebrations both before, during and after Christmas with our families, were action packed.  We stand on guard, watching for signs of stress that might trigger a meltdown or other undesirable behaviors.  Our son Nick is 24 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD).  The sensory overload of noise, crowds, overstimulation, and changes in routine all make for a dangerous cocktail living in the world of autism.

One thing that I have learned navigating Nick’s world with a dual diagnosis of DS-ASD is that you can’t let your guard down, EVER!  So was the case over the holidays, which for the most part, went smoothly.  Christmas eve while in route to mass, Nick rattled off a stream of swear words that could rival any salty, crusty sailor.  While the rest of the congregation was praying for good health and world peace, I prayed that Nick wouldn’t drop a G-D bomb in those moments of silence and genuflection.  Thank God, he settled down and was quiet during the service.

nick 2018 christmas

After Christmas we headed down to Texas to celebrate with my family. Our flight down to Houston was smooth.  We even take him into  the of the United Club these days. Yes, there were crowds, but Nick knows the drill and loves going places, so he is motivated to be compliant.

Nick cruising through his favorite part of Chicago O’Hare Airport….

nick at o'hare

Once we reached the condos, the first thing we all noticed was every single floor of the three-story building had a fire alarm next to each stairwell.  It was a land mind of red buttons, just begging for Nick to pull them.  All hands were on deck for the next few days. We all worked together securing blockers, reminding Nick, with the compliance command, “Hands to self, big guys keep on walking”.  He was definitely staring them all down as we passed each one during our stay.

On the second day of our visit, we arranged to take family photos at a local winery.  Nick has never been a fan of these type of photo ops. Sitting patiently for photos irritates him.  Afterwards, we did a wine tasting and the kids ate some appetizers.  There was no structure to the afternoon, just a family enjoying each other’s company.  Nick grew restless, and while no one was paying attention to him.  So, he spiked a wine glass, shattering it all over the concrete floor.  As the staff member swept up the mess, Nick tossed his brother’s marinara sauce in the same direction.  The red sauce splattered all over the staff worker’s jeans as he swept up the shards of glass.  I apologized profusely and explained that Nick had Down syndrome and autism.  It’s at this juncture, that I knew that we had to get him out fast, before things escalated into a full meltdown.  There is no reasoning with Nick at this point, so a few of us did a cut and run, to get him back to the condo.

Later that evening, the whole family gathered into one condo so the grandkids could open their Christmas gifts.  While I was sorting out and distributing the gifts, a familiar sound blasted from outside.  I jumped up and made a beeline out the door to look for Nick.  I made my way downstairs in a panic, alerting the other patrons that it was a false alarm.  I didn’t know where Nick had run to, and it terrified me.  But thankfully, he was waiting at the bottom of the stairs with his eyes glazed at the blazing alarms and lights blinking.  I have no idea if my son pushed more than one alarm.  I yelled up to Al to call the front desk and let them know it was a false alarm.  Meanwhile, I grabbed Nick’s hand and walked a good 200 feet away, so he wouldn’t get the reinforcement he craved.  My hands shook as I asked Siri on my iPhone, for the number to the Conroe Fire Department, located nearest the resort.  But then, a calm focus came over me, as I explained to the firefighter about my son and his penchant for pulling alarms.  The gentleman was very understanding and kind over the phone.  Fortunately, I caught them in time, so they did not dispatch a firetruck, whew!

That was #54 on fire alarm pulls for Nick since 3rd grade…….

firelite-pull-station

Bottom line, this is a reminder that our immediate family can never let our guard down, EVER.  It’s easy to get lulled into the fun and festivities, and get caught up in the moment.  But that’s the moment, that Nick can wreak havoc, in just a split second.  We can’t expect extended family members to understand Nick’s impulses in the way we do.  My husband, Al and older son Hank have a system of checks and balances in place when taking care of Nick.  One of us always has at least one eye on him at all times, especially in new environments.  We are the primary caregivers, and ultimately are responsible for Nick.  Sometimes we screw up in life, and we did that day.  But, you just have to learn from it and move on.

While Nick can give us all a run for our money at times, he also has a way of showing his pure heart.  On this trip he got to meet his new cousins Greyson and Gannon who are twins.  The twins are a year old, and Gannon has Down syndrome.  Nick was drawn to Gannon and the bond was clearly evident.  Nick was very gentle around him.  As my niece, Courtney was packing up the boys to leave, Nick bent down and gently loved on Gannon.  My family looked on and in the silence, Nick brought us all to tears. 🙂

 

My Niece, Courtney is the mom of four boys and wasted no time in becoming a great advocate for Down syndrome.  This is a blog I wrote last March about Courtney’s journey, @ https://nickspecialneeds.com/?s=Down+Syndrome+A+New+Beginning

Christmas holidays while fun, can be stressful for all of us.  Having a child with special needs creates more challenges with more noise, crowds, overstimulation, and changes in routine causing sensory overload.  This holiday was a reminder for our immediate family to stay vigilant, and remain on watch at all times.  The responsibilities of being a caregiver for a child with a dual diagnosis of DS-ASD is staggering and should never be taken lightly.  Now, I’m going to exhale, learn from my mistakes and keep pushing forward.  As 2019 begins, my mindset will attempt to shift from holiday stress to a calm, warm, and cozy winter peace.  I wish you all the same for the new year.

snowman in hot chocolate

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

~Teresa

Follow Nick on Social Media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Posted in Autism, Autism Spectrum Disorder (ASD), Dual Diagnosis Down syndrome and autism, Recreation/Leisure and Special Needs

Blog #225~Autism and Holiday Stress Tips

Blog #225~Autism and Holiday Stress Tips

Let’s face it, holidays are stressful.  Navigating the Christmas season with a child who has autism is even more demanding on families.  My son, Nick is 24 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD).  We’ve had our share of challenges, as do many families who care for an individual with special needs.  But, here are 10 ways to ease holiday stress and manage the upcoming weeks of festivities.

Keep Calm Christmas

10 Autism Holiday Stress Tips:

1.Start early, get as much done ahead of time with holiday preparations.

2.Pare down where you can, whether it’s decorations, presents, or parties. It’s okay to   say no or bow out early.  Flexibility is key!

3.Don’t rush, allow enough time to get from point A to point B. Give more notice when it is time to transition. This will help to avoid meltdowns.

4.When possible, try to stick to routines.

5.Avoid surprises, prepare your child ahead of time.  Make social stories using visuals or written words (depending on your child’s level of comprehension). This will act as a script for your child to follow. If they can see what’s expected, they will understand the plan and lessen anxiety levels.

IMG_3865

6.Provide pictures of family members and friends that you don’t see that often prior to visiting them.  Notify family and friends of sensitivities and sensory behaviors your child may exhibit.  Nick makes vocal stim sounds and taps objects which helps him to self-regulate.  Some individuals with autism do not like hugs or fail to make eye contact.  Family members might engage instead with a special handshake, high-five or Nick’s favorite, the elbow bump 🙂

Nick and jenna elbow bump

7.When traveling or lodging outside your home, pack comfort items like toys, music, movies, electronic devices and snacks.  Have these readily available.

8. Give your child opportunities to help out. Heavy work activities provide sensory input that is calming.  Here are a few Nick enjoys…..

 

9.Know your child’s limits.  There is so much sensory overload this time of year with excessive crowds, noises, lights and cramming too much into a day. This can be very overwhelming.  So, watch for signs of distress (Nick will pinch his own cheeks, yell and say I’m mad).  Redirect with a break icon, and seek out a quiet spot before activities begin.  It may be necessary bailout here before behaviors escalate, to avoid a meltdown.

10.Allow for down time, to kick your feet up and relax.  Weighted blankets are great for deep pressure that can help to calm the sensory system.  I recently found out these blankets are available at Target.  Hmmmmm……that sounds like a good excuse to go to Target. 🙂

Disruption in routines, schedules, and stimulating environments make for a holiday filled with fraught for individuals with autism and other special needs.  But preparing your child and having a bailout plan, will help keep the stress levels down, making the Christmas season more merry and bright.  How do you to keep calm this time of year?  Please share your secrets to surviving the holidays in the comments!

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

~Teresa 

Follow Nick:

017

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

 

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

Blog #224~Using Social Stories for Behavior Management

Blog #224~Using Social Stories for Behavior Management

Nick’s got a thing for button pushing, all kinds.  You name it, he pushes them, including mine.  Phone intercom, microwave fan, dishwasher, and his all-time favorite, fire alarms. My son is 24 years old and has a dual diagnosis of Down syndrome and autism.   He has a behavior support plan in place to address this behavior, along with throwing and dropping objects.  The incidences of the behaviors, seem to occur when he is bored or seeking attention.  It would be tempting to just throw my hands up in the air and accept this as Nick just being Nick.  However, I have always been determined to find ways to make things better for my son.  So, a few months ago, I rolled up my sleeves and got to work with Nick’s behaviorist.  Have things improved, yes and that’s what I’m happy to report this week.

Big Guy Nick 🙂

Nick has quite a rap sheet pulling over 50 fire alarm pulls since third grade.  In Blog #216~Putting Social Stories Into Action, I wrote about creating social stories to shape the desired behavior you want for a child.  A social story is a visual support that can help individuals with intellectual and developmental disabilities understand new events, along with reinforcing skills, tasks or behaviors.  The behaviorist and I created an incentive plan built into a social story. This is reviewed twice at his adult developmental training program.  The story encourages Nick to make good choices.  Following the story read, Nick walks the halls with a staff member.

The staff cues Nick, using the compliance commands, “hands to self” and “big guys keep walking”.  Now I hope this doesn’t jinx anything, but I’m pleased to report that Nick has gone 3 months without pulling a fire alarm.  🙂

Now back to the behaviors he exhibits around the house.  In Blog #216, the behavior of throwing his iPads was addressed.  For a week, I locked both of them up.  After a very long week, Nick was excited to get them back.  Before this occurred, I read this social story to him several times, having him follow along and pointing to the basket where he needs to put the iPads when he is all done.  The incidences of Nick dropping and throwing his iPads has reduced significantly.

iPad Social Story:

The success of the behaviors improving are due to 3 things.  Nick, as do many individuals with autism, respond well to visuals.  He may not be able to read words, but he can follow along with the pictures and understand what is expected.  Secondly, parents and caregivers must be consistent in reading the social story and remain in close proximity, reminding the child to make good choices.  Behavior change doesn’t happen just by making a behavior plan and putting together a social story.  Success occurs when everyone is on board to carry out the plan in a consistent manner and follow through with consequences.

Have these behaviors been extinguished?  The answer is no to that question, but they have been contained.  Nick attempted to pull a fire alarm out in the community last week, but failed.  At home, he drops and tries to throw his iPads, but not near as much.  I have to stay on him to make good choices and reward him with praise and elbow bumps when he does.  If he doesn’t make a good choice the iPads get locked up.

I think the fact that my son is open to making good choices and being more compliant, is a win in my book.  I find it hopeful, that Nick is learning new behaviors at age 24.  I will continue to strive on following through and reinforcing the desired behaviors that will help Nick be more respectful and compliant young adult.

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

~Teresa

Follow Nick:

Facebook and Pinterest @Down Syndrome With Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

Posted in Adult Day Programs for Special Needs, Autism, Behavior/ ABA, Down syndrome, Dual Diagnosis Down syndrome and autism, Fun Side of Nick

DS-ASD Fall Update

DS-ASD Fall Update

fall pumpkins

Here’s what Nick’s been up to this fall.  My son is 24 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD).  He attends an adult developmental training program each day.  The program keeps him busy with many enrichment activities and developmental learning skills are incorporated throughout the day.  Outside this program, Nick enjoys spending time with his personal support respite workers out in the community.

Some of the highlights of Nick’s day program are community trips, including shopping, museums, bowling and going out to eat.  In house, communication, functional living skills, recreation, music, movies, gardening, crafts and cooking are all a part of the curriculum.

Here are some of the fun things Nick’s been up to this fall outside the day program……

NIU Football Game, with Dad. Go Huskies!

NIU football game

Pumpkin Patch with Miss R….

Nick loves eating out and date nights with his personal support workers, Miss R, Jodi and Kelsey.  The look on his face says it all!  I think he’s got the “smizing” down, Tyra Banks 🙂

Here in Chicago, the fall weather was less than desirable.  But, there were a handful of mild, sunny days in the chilly mix. At least the Chicago Bears are playing some great football this season.

Go Bears!

Nick Bears Jersey

Nick is 24 years old, but I’ve noticed that he continues to gain new skills and behaviors which are both good and challenging.  I am always seeking new ways to support him to make good choices and curtail the undesirable behaviors, like button, fire alarm pushing, throwing and dropping things.  I am happy to report that some of these behaviors have started to diminish since adding in two new social stories.  Social stories are great tools to teach new skills and behaviors.  Next week, I will share more about these two stories, and how they have been implemented both at home and at his day program.  How’s that for a teaser? 🙂

Life has been good this fall, in Nick’s world, and the rest of us are just trying to keep up.  That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

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Instagram #nickdsautism

Twitter @tjunnerstall

 

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

Blog #218~Special Needs Parents,What We Need From a Friend

Blog #218~Special Needs Parents, What We Need From A Friend

Parenting a child with special needs can be lonely.  Having a support system is crucial to maintain a positive well-being.  Uncomfortable situations, surrounded by raising a child with special needs, make it difficult for people to know how to help as a friend.  My son Nick is 24 years old and has a dual diagnosis of Down syndrome and autism.  My close friends keep me sane, make me laugh and understand what I go through.  As a parent of a child with special needs, here is what we need from a friend.

Friendship Beatles

We need a friend to understand.  Parenting a child with special needs is a constant battle with schools, doctors, insurance companies, and daily behavior challenges at home.  Add sleep deprivation to the mix, and you have one cranky parent at times.  Imagine starting your day off, washing sheets and cleaning excrement off the wall and carpet of your child’s bedroom.  In this code brown emergency, your child goes downstairs and dumps out your freshly brewed coffee all over the kitchen floor.  This is a page out of my story some 15 years ago.  It’s the story of so many parents dealing a child who has Down syndrome and/or autism.  We rely on our friends to listen without judgement, and to understand the pressure and challenges we deal with everyday.  The best of friends, roll up their sleeves and pitch in.

hands and heart pic

One vacation in New Braunfels, Texas, my son got hold of my make up bag and made a huge Picasso mess on the bed sheets in the rental house we shared with friends.  My friend Sally, poured us a glass of wine, and jumped right in scrubbing the stains with me as we laughed at the absurdity of the moment.

A good friend, says “Tell me what I can do” instead of “Call me if you need help”.

As special needs parents, we need our friends to listen and understand that sometimes our world is so complicated, that we may have to decline invitations or cancel at the last-minute.  But please, don’t stop inviting us, sometimes we just need more lead time in order to secure a caregiver for our child.  Other times, our child may be having a bad day or meltdown and we just can’t get out of the house.

babysitter for autism

As a parent of a child with special needs, we also crave normal conversations.  Sometimes we are stuck at home, with our kids.  Please, don’t worry so much about us being too busy.  A simple text goes a long way, as does dropping by for a cup of coffee or glass of wine.  Honestly, when I can focus on my friends problems and help them out, it makes me forget my own and feel much better.  I treasure the moments with my friends, when we can dish about everyday life and share a few laughs together.  Every Thursday, we power walking together.  We vent, cuss, laugh and have normal girl talk.  It restores our sanity! 🙂  

friends therapy

A parent of a child with special needs, relies on friends that stand with us!  They listen, understand and share together with us.  We can’t do it alone, and our friendships sustain and keep us strong.  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 Adult Day Programs for Special Needs, Autism, Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #216~Putting Social Stories Into Action

Blog #216~Putting Social Stories Into Action

Recently I had to take a page out of my own playbook.  I took both iPads and locked them up for an entire week.  My son, Nick repeatedly throws and drops his iPads when he is done or the battery dies.   Nick is 24 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD).  During that week, I created a social story designed to teach him how to take care of his iPads.

A social story is a visual support that helps individuals understand new events, and reinforces a desired skill, task, or behavior. They are useful for individuals that have Down syndrome, autism or other intellectual/developmental disabilities. Over the years, we’ve used social stories to help Nick navigate new situations like starting back to school, doctors and dentist appointments, vacations, and independent living skills such as showering and brushing teeth. Social stories provide a blueprint as to what will occur and what is expected from a behavior standpoint. Knowing what will happen and what’s expected, will also help to reduce anxiety.

In this case, the social story was designed to help Nick understand what is expected of his behavior, and why it’s important to make good choices.  Here is Nick’s iPad social story:

iPad social story

In Blog #214 you can read how to make a social story, click here to view:

https://nickspecialneeds.com/2018/08/20/blog-214-how-to-make-a-social-story/

Social stories should be broken down into steps using visuals and succinct wording that depict the who, what, where, when, why and how an event or behavior needs to happen.  Review the social story several times with the child before the event, new routine or behavior is to occur.

After a week with no iPads, Nick was excited to get them back.  Before this occurred I read the social story several times.  Nick followed along and pointed to the basket that he needed to put his iPads in when he was finished using them.  I made sure to stay in close proximity when he was using his iPads, to redirect him in case he decided to drop or throw them.

So, did the social story work help to curb the iPad drops and throws?  Absolutely, it reduced the incidences by 80% in just one week.  That’s a huge improvement.  Nick returned his iPads to the basket frequently, and in some cases he at least set it on the table instead of chucking it.  This indicates that he has impulse control and able to make better choices.   He received lots of verbal praises and elbow bumps for making good choices.

happy choice sad choice

Each day,  I review the social story before Nick gets to use his iPads to reinforce making good choices.  In a few weeks, I will introduce a new social story to deal with another behavior area we struggle with around the house.  Many parents of children with a dual diagnosis of Down syndrome and autism have trouble with dropping, swiping and knocking over items.  Nick’s behavior in this area has increased over the last couple of months.  This will be a tough one to tackle, stay tuned…….

Cats Earth was flat

Remember that the goal in using a social story is to teach the behavior or outcome that you are expecting from the child.  Give them a script for success for making good choices.  Keep in mind, when introducing a social story, to use one at a time consistently, before adding more.

At my son’s  adult day program, they are using a social story with positive reinforcement for making good choices.  Nick has quite a rap sheet pulling fire alarms, with over 50 pulls since third grade.  Each day, the staff reviews the social story and walk the halls with him, encouraging him to “keep walking with hands to self”.  This story was developed by myself and the ABA therapist on staff at his day program.  The story reminds Nick (using visuals again), that it’s not nice to pull fire alarms, as it scares his friends,  hurts their ears, and that it is hard for some clients to move.  If he pulls an alarm, Nick must exit the building and go next door, so he doesn’t see or hear the fire trucks.  When he makes good choices, he earns a happy face and gets a reward at the end of the day:

nick social story sprite reward for fire alarms

Not to jinx things, but so far, the fire alarm social story is working well. 🙂

The happy face visuals have been effective for Nick, and  pairing it with the idea of making good choices.  Nick likes to please, but at the same time he craves attention, and will often get it with negative behaviors.  So the focus on targeting good behaviors with the icon will be carried thru to the dropping social story in the near future.

Social stories can help guide a child to understand what will happen, where and what is expected of their behavior. It’s a great visual tool for teaching new skills and routines.  They can help to guide your child to smooth and successful experiences both at home, school and in the community.  Do you have a child that likes to swipe, drop or throw things?  What’s the most expensive thing they have destroyed?  It’s not easy, navigating a child with a dual diagnosis of Down syndrome and autism.  Working with a BCBA certified behavior therapist to develop strategies and social stories can help improve behaviors significantly.  Your child is never to old to learn and improve their behaviors.

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