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

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

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

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

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

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

APE swimming 006 (4)

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

Nick still takes great pride in unloading the dishwasher today!

Nick dishwasher two

Here are some other ways the taskmaster takes initiative:

Nick getting out ingredients and utensils for his salad….

Nick dinner prep

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

Nick past cooking

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

Here are a few of the jobs that does:

*Recycling (replacement behavior for throwing)

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

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

*Put away groceries (organizing activity)

*Empty Dishwasher (organizing and sensory activity)

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

*Vacuuming (heavy work which is calming)

Nick working at a residence facility in high school….

Nick vacumming_Tabor Hills (3)

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

nick-cleaning-gigis

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

~Teresa

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:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

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

Follow Nick and see more vacation photos and adventures:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall