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:

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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, 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
 

 

 

 

 

 

 

 

 

 

 

Posted in Autism, Down syndrome, Resources for Special Needs

Blog #209~The Big 5-0 Fire Alarm Pull

Blog #209~The Big 5-0 Fire Alarm Pull

Well this happened over the weekend in St. Louis, Nick pulled his 50th fire alarm at a wedding reception.  The Unnerstall’s are a big family and like to celebrate in a grand way.  The venue was the Chase Park Plaza Hotel in St. Louis.  The cocktail hour was just wrapping up, as the procession began to move into the dining area, that’s when it happened.

firelite-pull-station

The fire alarm was tucked behind a curtain and only partially exposed.  That’s all it takes for Nick.  My eyes momentarily diverted to the photo booth area, just to the right of the curtain.  That’s when Nick made a run for it.  I dashed over in my 3 inch high heels, and grabbed his hand just as it grazed the alarm.  He got me, after an 8 year run with a clean record.  As his middle school teacher Jess told me once, “He’s cheetah fast!”

cheetah

Two young men in their twenties busted out laughing, one saying, “Man, I always wanted to do that.”  In the moment, I was not laughing.  But admittedly, it’s hard not to chuckle at the absurd number of pulls Nick has done since third grade.  We got someone to alert the hotel desk, that it was a false alarm.  Fortunately, they didn’t evacuate the building during that stormy evening.  We walked into the dining area as the lights flashed and the sirens blared loud for well over 5 minutes before they shut off.

I should add here that in Nick’s behavior plan, it calls to remove him from the building giving no reinforcement or reacting to his actions.  This reduces him from getting the rush he seeks from the loud sirens and lights flashing.  However, the venue was in the middle of downtown St. Louis with busy streets, being on the upper floor of the hotel, and stormy weather didn’t make it feasible to do so.  Visuals are used as well, these support a person who has autism.  He also has a social story that we review, however that seems to be ineffective.  Compliance commands are another tool we utilize.  If a directive has too many words, it may be too complicated for an individual with autism.  Thus, the individual may not be able to process the information.  Using compliance commands with fewer and concise directives help them to stay on task.  In the case of walking down a corridor, we use these two directives, “Big guys keep on walking” and “Hands to self, Nick”.  These compliance commands do help Nick to stay focused and remain on task.  Nick is then given praise and positive reinforcement for making good choices.

Nick is quite pleased at himself for adding to the wedding reception festivities, me not so much 😮 

Nick at Kurt Wedding

So how did this all begin?  Some individuals with autism are sensitive to over stimulation from a sensory standpoint.  Nick tends to actively seek out more sensory stimulation on a daily basis.  It all started innocently with car remotes keys.  Nick realized at an early age that if you push the red panic button, it sets off the car alarm and the headlights will flash.  He once took the key remote out of a babysitter’s purse, and proceeded to walk up to the front door, point it at her car and set off the alarm.  By third grade, he discovered fire alarms at his elementary school.  In a matter of 2 days he set the alarm off 3 times.  We’ve noticed a pattern over the years, that the alarm pulls tend to come in three’s.  Just last week, he set off an alarm at his day program when a staff member was tending to another client.  She thought Nick would remain on the swing in the gym.  But that’s when Nick strikes, just when you divert your attention, even for a second.

The first time Nick got me was leaving the doctor’s office, as I fumbled in my purse to get the car keys.  Another time, while I was wearing a clunky therapy boot, he let go of the grocery cart and darted to one at Dominicks 8 years ago.  His Dad “technically” has a clean record.  However, Nick nearly got one on Al, at Houston’s Bush International Airport where the alarms are painted silver.  Just recently, we attended Nick’s cousin’s graduation ceremony from Bowling Green State University.  Al took Nick to the restroom he came close.  Nick pulled up a cover which sets off a very loud mini alarm alert.

There’s been some good replies on social media, that have eased the sting of being the big 5-0, one being this, “I’m sorry but I just have to laugh.  I know that you probably don’t laugh when he does this, but the sign does say pull down.  So what else is he supposed to do?”  Another reply on Facebook, “Ever vigilant Nick!  He wanted to add to the excitement.”

Well, excitement is right, Nick sure did light up the wedding reception.  I guess if he’s going to pull #50 it should be in a big, fancy venue, surrounded by family.  Go big or go home, Nick!  This weekend is one for the memory book, and Nick gave the newly wedded couple a night they won’t forget.  As his tagline says, It’s Nick’s world, the rest of us are just trying to keep up.

That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick on Social Media:

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Instagram #nickdsautism

Twitter @tjunnerstall

 

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

Blog #178~ 5 Behaviors that have Improved with Age

Blog #178~ 5 Behaviors that have Improved with Age

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

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

5 Behaviors that have Improved with Age

1-Eloping/Wandering

2-Haircuts

3-Meltdowns

4-Self-injury

5-Poop Smears

1-Eloping/Wandering

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

Big Guy, Nick…

Nick fire alarm shirt

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

2-Haircuts

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

haircut visual

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

3-Meltdowns

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

meltdown

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

4-Self-injury

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

No pinching

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

Frustrated and Autism

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

*Poop Smears

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

poop icon

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

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

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

~Teresa

Follow Nick:

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Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

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

Nick’s World Update

 Nick’s World Update

Have you settled into 2017 yet, after the busy holiday season?  I’m so happy to be back to share Nick’s world with you!  Nick is 22 years old, and has Down syndrome and autism.  Here are some of the highlights of Big Guy’s holiday fun.

We spent the holidays at home, here in Chicago. Nick enjoyed seeing family.  He’s always happy to see his brother, Hank and share elbow bumps!

nick-and-bro-x-mas

Kibbie had a very “Meowy Christmas” 🙂

kibbie-stockings

Nick was excited to get a new iPad mini.  The new Big Grip case for the iPad mini is called the Big Grip Tweener.  It is much slimmer, more age appropriate in design, and best of all still protects as well as the original Big Grip case.

big-grip-tweener

Nick relishes a nice reflective bag almost as much, as his new iPad mini 🙂

nick-red-bag

Over the holidays, we entertained family and friends.  Nick is use to a certain schedule in the evenings.  It can be tricky to get him to stretch out the time, once the sun goes down. He was very patient and social during happy hour, and a leisurely dinner.  Inevitably, once the meal is over, he wastes no time.  He springs up, grabs his Little Debbie snack cakes and evening meds, then sets them on the kitchen island.  After dessert, he will beeline upstairs, strips off his clothes and is ready for a shower.

beelinne-pic

At the family gathering,  we tried stalling him while the desserts were being passed and the coffee was brewing.  I made the mistake of setting the Swiss Cake Rolls and meds off to the side for just a few more minutes.  Nick would have no part of this, and let it be known.  He took his iPad mini and did a huge karate chop right into the……

nick-pumpkin-pie

Nick was done!  We deflected the incident with an “uh-oh” comment and swiftly got his snack cakes back, to avoid a meltdown.  Sometimes, you have to compromise on your holiday schedule, and respect your child’s need to keep a consistent routine.

After the holidays, Al and I went on his company’s year in trip incentive to Costa Rica.  Nick was in very good hands with his respite care giver, Jodi. There was a good amount of logistics to do when leaving your child with a caregiver.  We put together temporary custody, child care and medical authorization agreements along with a detailed schedule.  In addition,  I prepared a social story so that he could see the change in routine and his schedule.  Here it is in part, below.  Social stories help to give the blueprint for understanding schedules and what each day will bring.  For more on using visual schedules, check out my last post, Blog #164~Why Use a Visual Schedule?

costa-rica-social-story

Nick had so much fun with Jodi going out to eat and hanging out at home. His other respite care giver, Miss R. also took him out over the weekend. We are blessed to have such caring, capable, and patient women to take such great care of Nick.

Want more pictures and videos of Nick?  Check out our social media sites. Follow Nick: Facebook @Down syndrome With a Slice of Autism, Instagram  #nickdsautism, Twitter @ #tjunnerstall

nick-taco-bell-new

All in all, the holidays and extended vacation afterwards went smoothly,  with only a dented pumpkin pie, and a few more attention seeking behaviors.  Most of these included higher incidences of dropping/ throwing things, turning water faucets on, and peeing on the floor next to the toilet.  Those behaviors are to be expected with busy holiday meal and house preparations,  a house full of company, and changes in routine.

Oh, one more thing, Nick managed to pull another fire alarm on  Friday the 13th. That is, the ultimate attention seeking behavior!  Tally count is now at 43 pulls since third grade. Hey, it’s Nick’s world, the rest of us are just trying to keep up.

Here’s to getting back to a regular routine and settling into 2017.  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, Education and Special Needs

Blog #145~Hitting Milestones, Moving On

Blog #145~Hitting Milestones, Moving On

images

This weekend we had a big milestone.  Nick’s brother Hank, graduated from Northern Illinois University with a degree in Marketing and a minor in Communication.  Nick is 22 years old and has Down syndrome and autism.  He recently reached his own milestone, finishing up the Post-Secondary transition program.  Nick now attends an adult day program.  He has a full day with activities including on site activities, community trips, vocational jobs (recycling, cleaning both on site and at a local church), and working a food pantry).  He keeps busy and is very happy in this new program.

IMG_7299

On the way to the NIU campus, we passed by his old high school. I pointed MVHS out to Nick and he instantly replied and signed, “All done”.  My niece, Anna, their Grandpa Jim, and I were astonished.  Nick recognized that he had been there, done that and had moved on.

Nick at MVHS graduation a few years ago, held at NIU Convocation Center…

IMG-20130526-00101

The mood in the NIU Convocation Center was festive.  Nick swayed back and forth in his seat to the music of the steel drum band jamming in the background. I’ve never heard the Pomp and Circumstance played quite like this.  Instead of getting teary eyed as I normally would, it felt more like a delightful celebration.

NIU Steel  Drum Band=Awesome!

NIU-25-300

Nick was very patient and kept quiet through all the speeches.  It was a lovely day, and a proud moment for the whole family. Nick’s Dad was full of pride, as he is an alum of NIU and also a marketing major.

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Nick looks like he is eyeing an alarm in this picture, doesn’t he?  He didn’t pull one on graduation day (whew)!  But, he did get another last Friday at his adult day program site.

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Current count=36 fire alarm pulls.

At last, both of my sons are done with school and moving onto their adult lives.  My wish is for Hank and Nick is for them to feel productive, contribute to society, and be happy in all they do.  I am very proud of my guys.  It was a good day at sea.  That’s what’s in my noggin this week.

~Teresa

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

Mother’s Day Break

Mother's Day

Mother’s Day Break

I hope that everyone had a wonderful Mother’s Day.  This week, I am giving myself a break on posting a blog.  My son Nick, has Down syndrome and autism and is 22 years old.  He is doing great in his adult day program.  Well, except for one thing. Yes, the spell has been broken.  But, he did manage to make it 3 full months without pulling a fire alarm.

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Current fire alarm pull count=35 pulls since third grade

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It’s Nick’s world, the rest of us are just trying to keep up!  That’s what is in my noggin this week.

~Teresa

Follow Nick:  (See what he’s doing with a mallet)

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Posted in Autism, Down syndrome

Blog #111~ Constant Child

 

Blog #111~ Constant Child

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

Thomas the Train

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

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

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

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

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

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

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

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

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

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

~Teresa

 

Posted in Autism, Down syndrome, Education and Special Needs

Blog #103~Vocations for a Person with Special Needs

Blog #103~Vocations for a Person with Special Needs

Some 20 years ago when my son was born with Down syndrome, I wondered what kind of job Nick could do when he became an adult. I found myself gravitating to the checkout lines with the baggers who had Down syndrome.  Like a stalker I watched them work and interact with customers.   I’d ask for a carry out so I could chat more and offer up a huge tip.  I found a lot of hope in such moments.

Those dreams were crushed when autism ravaged my son’s mind and body. His speech would not come as it should have.  His behaviors were strange with all the stimming and worst yet, they became unpredictable.  Autism robbed his chance of being the best that he could have been with just Down syndrome.

Hope came back while Nick was in high school. In Blog #57~Community Jobs and Nick,  I wrote about what jobs he held out in the community. The link is @https://nickspecialneeds.wordpress.com/2012/04/17/blog-3-getting-your-goat/

Nick working at Re-Store (Habitat for Humanity)…..

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Nick takes a lot of pride in his work.  Okay so, he might have pulled a fire alarm at his vacuuming job at a nursing home (woopsie).But for the most part he participated well in all his jobs.

Nick working at Tabor Hills 🙂 ………..

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Fast forward to the present, Nick finished high school and attends a post-secondary transition program. In this program the students work in house on job skills, are employed in the community, and some take college classes.  While Nick participates in production and vocational work in the school building, he no longer works out in the community.  His unpredictable behavior, especially the fire alarm pulls (30 since third grade) put him at too much risk to hold a job.  Reality has sunk in. 😦

I’m not going to lie. It’s a kick in the gut. The daunting task now is to come up with a plan.  How will Nick occupy his days once the bus stops coming to the door (at age 22)? I reached out to some of his teachers from high school awhile back.  (Originally I planned to make Blog #100 to be “100 Cool Things About Nick” That was way too ambitious and long.)  But here are a few things they sent to me that fit nicely here:

From Mrs. Hunt (his primary teacher and case worker):

Nick has great functional skills! I’ve seen him help with a variety of chores and complete personal care routines better than some typical teens! Nick is a hard worker and loves to vacuum. Nick has a hilarious sense of humor! His laugh and smile are contagious, even when he’s being a stinker- which makes behavior management even tougher. Nick is clever and perseveres. When he’s determined, he’s going to have his way. Elbow bumps- this is how I know who has a good relationship with Nick. His elbow bumps make a person feel awesome.  I love that the last time I saw him, he still gave me one.  I love that Nick is a typical young man at heart- burps and fart jokes so funny.” 

Being silly with Ms. R, his aide in high school 🙂

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His vocational teacher, Ms. Stoodley offered up some ideas for possible jobs for Nick: 

  • Dancer
  • Happiness Creator
  • Adult Education Educator (all of us that he has taught and made better)
  • Vacuuming expert
  • Fire alarm Coordinator
  • Siren Director 
  • Professor of Dumping
  • Screw Sorter Assistant

 

I am slowly digesting the fact that Nick may not be able to work in the community. We need to look at his strengths, then create a meaningful day for him where he is productive and happy.  He is a “happiness creator” even in the midst of creating chaos. So yes, there is uncertainty regarding his future.  We have 17 month to figure things out.  Stay tuned……

That’s what is in my noggin’ this week,

~Teresa