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

Blog #217~DS-ASD: Why the Autism Label Matters?

Blog #217~ DS-ASD: Why the Autism Label Matters?

Over the years I’ve read countless stories of parents struggling to get an autism evaluation and diagnosis for their child who has Down syndrome.  IEP (Individual Education Plan) teams often tell parents that, there is no need to get an autism label, because they already have a primary diagnosis of Down syndrome that they can work with.  A doctor may dismiss the idea because the child makes good eye contact, and is highly social.  This is my story as well with my son, Nick who is 24 years old and has a dual diagnosis of DS-ASD.  So, why does the autism label matter?

The book “When Down Syndrome and Autism Intersect, A Guide to DS-ASD Parents and Professionals” by Margaret Froehlke, and Robin Zaborek, states that:

“It’s only in  the past 10 to 20 years that we’ve learned that up to 18 percent of persons with Down syndrome will also have autism or ASD (autism spectrum disorder).  This is information that most healthcare professionals are not aware of and underscores the importance of this reference guide.”

Down syndrome and autism intersect2

Getting the secondary diagnosis of autism for an individual with Down syndrome will open up new doors for services to address the unique needs associated with DS-ASD.  For a parent, it validates what they have suspected for quite some time, and allows them to move forward to get services and support for their child.  Honestly, I was sad at first to receive the news of an autism diagnosis.  But eventually, I realized that this label explained the speech deficits, complex sensory, stimming and violent behaviors that Nick was exhibiting.  I rolled up my sleeves and sought help from the school IEP team and support groups to figure out how to help my son.  The secondary formal diagnosis of autism, enabled us to access the services from the district’s Autism Consultant.  This was the key to opening up new doors that helped in the areas of behavior and communication.

Behavior and communication go hand in hand.  As a child matures and approaches puberty, the behaviors can escalate to meltdowns that endanger themselves, family and school staff and peer students.  It is essential to determine the function of these behaviors and get a positive behavior support plan in place.  Evaluating the mode of communication is the second piece of the puzzle that must be addressed.  If a child is frustrated due to lack of speech or being non-verbal, they will often act out through their behaviors.  Individuals with DS-ASD may act out because they are trying to make sense of their world.  That is why a positive behavior support plan and mode of communication can enable a child to make their needs known, so they can get these wishes met.

autism-scrabble-letters-by-Jesper-Sehested

A BCBA Autism Consultant typically observes the child and takes data on behaviors by doing a Functional Behavior Analysis (FBA).  This detective work will uncover what is causing the behavior and lead to developing a behavior plan to support the child.

Frustrated icon   Detective-clipart-animation-free-images-2

Once the target behaviors have been identified, the Autism Consultant and IEP team members, along with the parents, can collaborate to find strategies to support the child.

For example if a child hits or pinches himself (Self-injurious behavior known as SIBS), or hurting others.  The Autism Consultant would determine possible causes and the setting in which it took place, and what the function of the behavior could be (avoidance, escape, boredom, etc..).  Possible antecedents might include:

*Diverted staff attention

*Unstructured/wait time

*Loud or crowded environment

*A change in activity to a non-preferred activity.

*Disrupted routine

*An object or activity is taken away

Supports can be put into place so that the child better understands what is expected.  A visual schedule, social stories, and communication mode (Picture Exchange Communication System knowns as PECS, or a higher tech, talker device) can be determined and put into place to allow the child to express their feelings, wants and needs.  The use of sensory diets and breaks, using noise cancelling headphones help the individual cope in stressful, crowded and loud environments, or regulation when the child is over or understimulated.

Providing behavior and communication support and strategies interventions for individuals with a dual diagnosis of DS-ASD will make a positive impact both at school and in the home setting.  In addition, the secondary diagnosis of autism opens up doors to more services and funding from state for respite care and behavior support at home. Having outside help with respite care, relieves the burden of stress on the family, and enables parents to continue to enjoy personal interests and taking a break outside the home.

Getting a proper and formal assessment and evaluation for a dual diagnosis of Down syndrome and autism is a game changer.  Individuals with DS-ASD experience the world differently than just having Down syndrome or autism alone.  Intervention and support strategies can be targeted to the individual to specifically address behavior, communication and sensory needs for the child.  Finally, the second label of autism, will open up doors to support groups and additional funding for waivers that provide in home support and respite care for weary families like mine.

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 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:

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Instagram @nickdsautism
Twitter @tjunnerstall
 

 

 

 

 

 

 

 

 

 

 

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

Blog #215~DS-ASD Independent Work Activity Ideas

Blog #215 DS-ASD Independent Work Activity Ideas

Task bins and binders are a great way to teach academic, vocational and independent living skills.  The sky is the limit when creating activities to develop fine motor skills, letter, number and object recognition, sorting, assembly and sequencing.  My son Nick is 24 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD).  I’ve created many TEEACH (Treatment and Education of Autistic and Communication Handicapped Children) inspired activities for my son.  The TEEACH method is a structured learning environment that is visual based to help cue a student to working independently.

When introducing task bins and binders, begin with one or two at a time.  Create a visual schedule that you can build upon that includes something to work for (a highly preferred reward).

First-Then Visual:

first then work

Once your child or student is successful with the First-Then schedule, begin to increase the time on task and introduce new task bins and binder activities.

Expanded Work Schedule:

working for chart

So, what type of work activities should you include for your child or student?  My first suggestion is to look at their strengths and build around those.  My son, Nick is good at sorting and sequencing.  Over the years in his IEP’s (Individual Education Plan), we have built goals and jobs around this strength.  Secondly, pick activities that the child or student can do with success and minimal prompts.  This will help them stay motivated and be less frustrated.  Finally, once skills are mastered independently, begin to add in new tasks one at a time.  The new tasks should always be paired with the mastered skills, to encourage confidence and minimize frustration.  Note that point prompting and hand-over-hand may be necessary to assist them in the new task.

Examples of Fine Motor Skill Development Activities:

Wooden Beads on a String making a Colorful Toy Necklace                                  Fine motor stringing Nick

fine motor animals             fine motor clips

Puzzles and Matching games can foster academic and speech development:

 

Be sure to include puzzles and activities that your child or student enjoys, whether it’s Thomas the Tank Engine or Disney’s movie Frozen; this will peak their interest in working. 🙂

These binder activities were made by a speech therapist, grouping like sounds together to work on articulation in addition to matching:

matching

Color matching binder activity:

matching pies

Teaching matching and pairing them with holidays and season changes binder activities: 

 

matching fall          matching weather

Teaching emotions matching binder activity:

(Does the child or student respond and understand better to actual photos or icons?  Build the activities around what works best for them)

emotions2             emotion icons

Assembling and sequencing activities can build skill development for future vocational work:

assembly shapes      assembly school supplies    assembly nuts and bolts     Nick packaging door knobs_Habitat_4 (2)

Silverware sorting and rolling could lead to a job in a resturaunt:

silverware sorting     silverware rolling

Currently, my son Nick is working for 30-45 minutes on task bins and binders.  Here’s how I’ve set it up at home:

Task Two Strip     bins 1 and 2     Bins 3 and 4     nick folding washcloths

Depending on how he is feeling, I gauge what to put in each work bin.  On this particular day, he was not moving as swiftly through the tasks; so I only put one in each bin.  However, there are other times when he flies through the work, so I’ll put in a several in each bin.  Bottom line, listen to your child or student, and look for cues if they seem tired or frustrated and ease off on the demands you are placing on them.

School support teachers/case managers, speech, occupational and ABA therapists are great resources to ask for ideas and materials.  There are plenty ideas on Pinterest.  Many of the materials can be bought at dollar or Five Below stores as well as garage sales and resale shops.

Task bins and binders help children, students and adults like my son, Nick to develop academic, vocational and independent living skills.  Be consistent in the delivery with visuals, task and rewards, introducing the work in small increments.  Alternate the activities with easier or personal interests, (EX/ Disney’s Frozen or Thomas the Tank engine puzzles and matching).  New activities and skills may require hand-over-hand assistance and point prompting.  If the child or student becomes distracted, or bored remind them what they are working for by pointing to the reward (which has been pre-selected).  During the work session, listen to signs and cues of distress or frustration.  Offer encouragement (good job, you got it, yay, uh oh-try again) and back off on the amount of work and time spent before behavior escalates to anger.  Choose activities that promote academic, future employment (whether it’s paid or volunteer work), and functional living skills.

Task bins and binder activities done both at home and school,  will help your child or student become confident, more independent and productive in society.  That’s what is in my noggin this week. 🙂

~Teresa 

Follow Nick on Social Media and view videos of Big Guy in action:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram @nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Posted in Autism, Doctors and Dentists, Down syndrome, Dual Diagnosis Down syndrome and autism, Feeding, Personal Hygiene, Toileting, Resources for Special Needs

Blog #214~ How to Make a Social Story

Blog #214~How to Make a Social Story

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.  My son, Nick is 24 years old and has a dual diagnosis of Down syndrome and autism.  Over the years, we’ve used social stories to help him 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.

social-stories go to class

As you can see from the illustration above, a social story should use succinct wording and may include visual, depending on the ability and age of the child.  Individuals with autism often understand better with pictures.  Support teachers and speech therapists are great resources for creating social stories for your child.  Google Images and Pinterest both offer many social stories to help you get started.

How to Make a Social Story:

1. Choose a specific event (starting school, a doctor visit, hygiene routine).

2. Break the story down into steps, including who, what, (and why depending on the child’s cognition level).  Use the pronouns “I” or “we”.

3. State the desired behaviors that you want the person reading the story to do for each step.

4. Include visuals either on-line or actual pictures of the setting.

5. Show the desired outcome, this may include a reward or verbal praise like “good job”.

6. Read the story together with the child repeatedly for several weeks before the event or new routine occurs.

hand_washing_routine

social story morning routine

Some individuals may respond better to video modeling.  Making a video of the desired task or behavior can help a child learn a new routine, adjust to a new environment or learn a skill.  As with social stories, the script should be simple in wording and broken down step by step.

Both social stories and video based modeling can help teach new skills, venues and routines.

Here are a few more ideas for using social stories or video modeling to teach your child:

*New job skill

*Fine motor tasks (cutting food, buttoning a shirt, pouring milk, handwriting)

*Gross motor skills (swimming strokes, riding a bike, yoga, sports)

*Grooming and hygiene routines (brush teeth, shower, toileting, dressing)

*Morning, afternoon and bedtime routines

*Household chores

*School Routines ( new school, picture day, assemblies, new curriculum in PE)

*Visits to doctor, dentist, blood draws, haircuts

*Community trips, vacations and special events

*Teaching social skills (playing games with peers, turn taking)

When you know what is going to occur, you feel less anxious.  Fear can lead to avoidance for all of us.  Utilizing 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.  As the new school year begins, create a social story that includes actual pictures of the school building, classroom, lunchroom, gym and any other areas your child will be in.  Social stories will help to guide your child to smooth and successful experiences both at home, school and in the community.  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, Dual Diagnosis Down syndrome and autism, Education and Special Needs, Parenting Special Needs

Blog #213~Back to School Tips for Special Needs Parents

Blog #213~Back to School Tips for Special Needs Parents

There are a few more areas to consider when sending a child with special needs back to school.  Children with intellectual and developmental disabilities may not be able to understand change and transitions related to school.  The student’s language skills may be limited and they might have difficulty expressing emotions.  This can all lead to anxiety which can result in behavior problems.  You can help your child by planning ahead, getting organized and putting visual supports in place for the new school year. Here are 5 tips to ensure a smooth start to the new school year for your child with special needs.

backtoschool94

5 Back to School Tips for Special Needs Parents:

1. Look over your child’s IEP (Individualized Education Plan) before school begins. The IEP outlines academic and functional goals, supports needed, accommodations and services. Reach out to your child’s case manager/IEP coordinator or Support Teacher, and ask specifically how these will be implemented, and how data will be tracked.  If there is a Behavior Support Plan (BSP), review it, and make sure that all staff members working with your child have as well.  Note anything that might need to be tweaked in both plans, and share with the school staff.

2. Arrange a visit to the classroom before school begins.  Provide a profile/resume sheet about your child for the staff, containing any information that will help them understand their likes, dislikes, behavior and communication concerns.  Look for visual supports and a schedule posted in the classroom to enhance learning and understanding.  You can request that a social story (pictures or video); be made of the settings that your child will be in at school, (classroom, lunch room, gym, sensory area, etc.).  It also helps to include pictures of support staff and classroom peers (if possible), in the social story. If a child with autism can see it in picture and/or written form, they will better understand it.  Visual supports, social stories and schedules all act as blueprints to help your child navigate their day.  This will help them understand what is expected and occur, leading to reduced anxiety levels for your child.  The support teacher/ case manager can make these for you to read with your child before school starts.

Social Story for Back to School:

 

 

3. During the classroom meet and greet, arrange a mode of communication with your child’s teacher.  In the past I have used both email, texting and a communication notebook which goes back and forth.  My son, Nick has a dual diagnosis of Down syndrome and autism.  His verbal language skills are limited.  The communication notebook gives the child a voice that describes what their day has been like at school, and how they are doing at home.  This is especially helpful, if your child didn’t sleep well, and you can give the teacher a head’s up, to incorporate more breaks in the day if needed.  In addition to a communication notebook, the teacher can create a custom daily report to share with parents.  Depending on the skill level of your child, words or pictures can be used and looked at together at home after school each day:

Daily Report Charts:

4. Start Early! Get school supplies, clothes and shoes shopping done and haircut at least a week before the start of school.  Having a child with special needs often means a lot of angst over haircuts. For Nick the stress of getting a haircut use to affect him for several days afterwards.  Fortunately, now that my son is older the haircuts are much easier.  Maturity and a good set of clippers have made haircuts successful.  I’m super excited to share with you the new hair clippers that are a GAME CHANGER!  The Remington Short Cut Pro Self-Haircut Kit is cordless, smooth, quiet and quick as it takes more hair in a single pass.  It’s the most sensory friendly clippers we’ve ever used on our son.  5 Minutes and no tears!

 

The night before school starts, have your child help lay out the clothes, organize the school supplies and pick out lunch/snack choices.  This will help to set the tone for  a smooth start to the day and this helps especially at six o’clock in the morning. One thing that was NEVER EARLY; the school bus. Make sure you have carved out your schedule accordingly and have something for your child to do while you wait. On average, we’ve waited 30-45 minutes for the bus to get to our house the first few days of school.

5. Consider doing volunteer work at your child’s school. It is fun and you can see firsthand how your child is doing in the classroom.

Here are a few school volunteer ideas:
*Holiday Parties
*Art Awareness Presenter
*Chaperone Field Trips
*Field Days
*Picture Day
*Work book fairs
*Library aid
*Special Olympics Practices
*Assist Case Manager/ Support Teacher- Making copies, laminating, helping to create classroom supports.

Taking a few extra steps to get organized, familiarizing yourself with the IEP/ Behavior  support plan, visiting the classroom, and providing visuals for your child will lead to a smooth start to the new school year.  Getting involved as a classroom volunteer is rewarding and a great way to interact with student peers and school staff.  Careful planning, organization and providing visual supports will make things easier for your child starting back to school.  Do you have any back to school tips or tricks for your child with special needs? I’d love to hear them.

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

back to school bus

Follow Nick on Social Media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram @nickdsaustim

Twitter @tjunnerstall

 

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

Blog #212~DS-ASD Behavior Management

Blog #212~DS-ASD Behavior Management

Behavior problems are common for individuals having a dual diagnosis of Down syndrome and autism.  Speech deficits hinder a person’s ability to communicate wants and needs, leading to these challenging behavior problems.   As I’ve mentioned in previous blogs, every behavior even the bad ones, are an attempt to communicate something.  For the past 24 years, I have experienced this on the front lines with my son Nick, who has a dual diagnosis of Down syndrome and autism.  It’s important to get a clear picture of what is triggering the problem behavior.  To do this, try taking a step back and determine what is causing the behavior.

For individuals with a dual diagnosis of Down syndrome and autism, some challenging behaviors include property destruction (such as dropping, throwing, dumping things on the floor, and breaking objects).  Other behaviors might include elopement, dropping and plopping, stimming, yelling, repetitive movements and physical aggression to name a few.

There are 5 steps you can take to discover the causes of a problem behavior and prevent it from occurring.  It is important to mention here that, these steps should be taken with the support of a child’s IEP team and ideally using a Functional Behavior Assessment (FBA) with a Board Certified Behavior Analyst (BCBA).  It starts with doing a little detective work.

Detective-clipart-animation-free-images-2

1.What is the problem behavior, describe it?

2. Observe when the behavior occurs and when it doesn’t?  

3. Make a guess about what could be triggering the behavior and what might be reinforcing it.

4. Come up with a plan to prevent the behavior including supports that will help improve it in the future.

5. Track the behavior to see if the plan and supports are working.

Let’s put this into practice with the behavior of a child throwing, dropping, breaking and dumping out things around the house (property destruction):

1.”Billy” returns home from school and goes upstairs to his parents bedroom.  He turns on the water faucets full blast, and takes a photo frame and throws it down from the top of the stairwell where is shatters to pieces.

2. The behavior occurs after school, as his mom is unloading the backpack and reading the communication notebook.  It also occurs when paren’s attention are diverted, (doing chores, talking on the phone) and while the child has down time.

3. The antecedents are sensory seeking, lack of attention, unstructured down tome and boredom. Billy is reinforced by getting negative attention from his parents, who naturally get upset when something gets broken or a mess is made in the house.

4. The plan is for Billy to have a more structured routine during those down times when parents are busy working around the house:

-Create an afternoon visual schedule for Billy to put away the contents of his backpack and engage him in the chores with heavy work (a calming sensory activity).

-Replacement activities will include jumping on his mini trampoline, carrying laundry baskets to the washing machine and loading it, or vacuuming.

-Billy will be reinforced with high fives and praise, followed by a reward, upon completion of these replacement activities.  Rewards may include a choice of a favorite toy, iPad, movie, or snack.

-Billy will also be redirected to use his AAC device (talker) to express his needs.

-Parents are encouraged remain calm, matter of fact with little emotion, making minimal eye contact while using a soft voice, when the child engages property destruction.

5. Parent and teachers will keep a log to track this behavior both at home and in the school setting.

Sample ABC Chart used to do a Functional Behavior Analysis:

ABC chart

Before identifying the antecedent, behavior and consequence on the ABC chart, it is important to look at the setting prior to when the behavior occurred.  Note any changes in medications.  Is the child sleepy, overheated or too cold?  Are there any disruptions in staff or transportation to and from school? Is the environment to noisy or quiet?  These factors can all play a part in causing behavior problems.

The best behavior plans have proactive strategies and supports to encourage good behavior.  In my experience, the behavior plan must be revisited several times a year and tweaked accordingly, to support positive behavior in a child with a dual diagnosis of Down syndrome and autism.  The key to behavior management is to step back and do the detective work, and come up with a plan to cut these behaviors off at the pass.  Working with the IEP team and a certified BCBA behaviorist to develop a behavior plan will lead to better responding thoughtfully to what the child is trying to communicate in their wants and needs.

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

Blog #211~50 Years of Special Olympics

Blog #211~50 Years of Special Olympics

Special Olympics 50 years

“Let me win, but if I cannot win, let me be brave in the attempt.” 

This is the motto of the Special Olympics, encouraging athletes to find the courage to give it all you got.

“The torch was first lit on July 2, 1968 when Eunice Kennedy Shriver ushered in a new era for people with intellectual disabilities, when — with 1,000 athletes from three countries — she opened the very first Special Olympics International Games at Soldier Field in Chicago.”

Two weeks ago, the torch returned here to Soldier Field here in Chicago, where it all started.  Fifty years later, the games have become a global movement reaching more than 5 million athletes.  Sport events include track and field, basketball, bocce, cycling, figure skating, soccer, power lifting, gymnastics, judo, tennis, swimming, skiing and bowling to name a few.

“Special Olympics is an international organization dedicated to empowering individuals with intellectual disabilities to become physically fit, productive and respected members of society through sports training and competition.”

My son Nick has a dual diagnosis of Down syndrome and autism.  Over the years, he has participated in Special Olympics competing in track and field, bocce and bowling.  The spirit, camaraderie and dedication of volunteers made the experience very rewarding for Nick and our family.  Watching the determined athletes is awe-inspiring.

Nick competing in the 50 yard dash at North Central College….. 

Nick backside special olympics

Nick special olympics podium

Nick showing off his gold medal earned at bowling…..

Nick special olympics bowling

Nick taking a bow at the top of the podium as they played the olympic theme song.  He won the State Special Olympics gold medal for the softball throw competing in down state Illinois…..

Nick Special Olympics

Nick competing in Bocce with his volunteer peer partner, Bobby.  Incidentally, Bobby (who is Nick’s brother’s best friend), has since gone on to become a Special Education Teacher in the north suburbs of Chicago…..

Nick special olympics bocce     nick special olympics bocce two

As my son entered high school, we had to put Special Olympics on the shelf.  Having a dual diagnosis of Down syndrome and autism made it difficult for Nick to participate without having a 1:1 aide at all times. This just wasn’t feasible.  As a parent, you can only do so much for your child.  I made the decision to put speech and occupational therapy first, rather than Special Olympics practice events, after school.  However, there were other inclusion opportunities for him in high school, which included Peer Partners and community trips with his respite workers.  Nick also participated in a wide range of P.E. programs with peer volunteers to assist and encourage him in high school.

Special Olympics has impacted the lives of athletes and volunteers for 5 decades.  Eunice Kennedy Shriver’s vision has grown from a flicker of the first torch flame, to an international movement.  “Special Olympics is dedicated to use the power and joy of sports to impact inclusion and respect – one athlete, one volunteer, one doctor, one teacher at a time.”  Congratulations to Special Olympics for 50 years of making a difference in the lives of individuals with intellectual and developmental disabilities!

eunice_dennedy

That’s what is in my noggin this week.

~Teresa 🙂

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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 🙂

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

DS-ASD Nick’s Summer Update 2018

DS-ASD Nick’s Summer Update 2018

We have a lot to share after a three-week blog break.  Nick’ been flying the friendly skies and having a blast on vacation!  My son Nick is 24 years old and has a dual diagnosis of Down syndrome and autism.  This week, find out what Nick’s been up to this summer.

Vacation started with a family reunion in Branson Missouri.  I haven’t flown solo with Nick in quite a few years, so I was feeling a little anxious.  I checked the flight status on my phone, while in the taxi heading to the airport. My jaw dropped, our flight got canceled due to aircraft maintenance.  This was the last thing I needed.  We were directed to United Airlines Additional Services line.  The gentlemen in front of me, smiled at me and Nick, saying “This is the line you don’t want to be in.”  I was nervous and saying prayers as we waited for nearly 30 minutes…….

Nick airport additional services

Fortunately, we got re-booked on another flight that was leaving at the same time.  Nick and I navigated the corridors  of O’Hare as we have done multitudes of times as a family.  We made it to the gate with 10 minutes to spare.  There was no time for a quick bite to eat, as I had alloted in my timetable.  So, I had to buy the most expensive bag of Cheez-Its to make do.

Airport Cheez-Its= Cha-ching $5.00  I should have taken my own advice from Blog #208~ https://nickspecialneeds.com/2018/06/11/blog-208vacation-tips-for-parents-of-a-child-with-special-needs/and packed some snacks.

cheezits

The family reunion was a great time and opportunity to catch up with everyone.  My mom’s side of the family has a reunion every two years.  This year was hosted by Uncle Jackie and Aunt Karen with over 100 members attending.  The resort and accommodations were wonderful.  Best of all the Overbey family give the warmest hugs.  Nick had a great time and got a couple of special gifts from his aunt and uncle.

Autism awareness bear from Aunt Mary…

NIck Autism Bear

Fire alarms from Uncle Robert…

Nick fire alarm at branson

A few weeks later, we made our annual trip to Virginia and the Outer Banks in North Carolina.  Nick’s uncle and aunt have property in both places.  Here are the highlights from VA and OBX….

Vacation in VA started out in Nick’s happy place….

nick pizza in va

The views in Virginia are breathtaking.  This property sits overlooking the James River. Uncle Ron was a gracious host on our visit here.  Time spent here is about unplugging, relaxing and enjoying the peaceful atmosphere…

VA view

Nick swing VA 2018

We did a few tours while in Virginia.  One was Blenheim Vineyards, established in 2000 by owner, singer and artist Dave Matthews.  The venue is laid back, with a deck overlooking the vineyards with a nice wine tasting offered.  On another day, we toured the Virginia Distillery.

VA whiskey

Uncle Ron and Nick’s Dad, Al sampling whiskey….

whiskey al and ron

Nick is not so much of a fan 🙂

Nick whiskey

Our second part of the trip was in the Outer Banks in North Carolina, also known as OBX.  Here are some of the highlights:

When you see this sign, it’s time to exhale, let go of all your worries and chill….

OBX signs 2018

Currituck Lighthouse…..

Curriteck Lighthouse

Floating on the lazy river pool…

Nick lazy river in obx

Nick standing guard at the crow’s nest…..

Nick ruling crows nest

Nick always manages to find the vacuum at Uncle Ron and Aunt Ali’s beach house.  He’s practicing his independent living and job skills……

 

For the first time in many years of coming to OBX, Nick wanted to spend a lot more time on the beach.  He’s never been a fan of the sand, however this year he put on his socks and shoes and came out almost everyday.  Wearing tennis shoes and socks, along with sitting in the higher beach chair, helped him cope better with the sensory issues associated with sand!

View of Duck, OBX beach…..

obx view 2018

Nick’s Dad and Brother……

Al and Hank obx 2018

Nick and his brother Hank, taking in the sunset at OBX….

Hank obx 2018    nick and hank obx 2018

Nick flirting with his brother’s girlfriend, Kristin on the crow’s nest 🙂

Nick and Kristin OBX

Cheers from me and Kristin, beach hair, don’t care….

k and me obx

The vibe in the Outer Banks is calm, family oriented and chill on the beach.  You take in the ocean breeze and the sound of the waves hitting the sandy shores and feel the tension melt from your body.  Turn the knob to Bob, FM 93.7 radio and sip on a cool beverage, leaving your worries behind.  Nick feels very comfortable here.  We are extremely grateful for the opportunity to vacation here each year, at Ron and Ali’s beach home.  This year was not the same, without Ron, Ali, Sam and Anna.  We send our love and best wishes to the family and wish Ali a speedy recovery.  Cheers to making more memories with EVERYONE together, sharing laughs and lives at VA and OBX, next summer.

Beach Fixes Everything

It’s been a great summer for Nick and our family, along with extended family.  Vacations are great to unplug, relax and restore the body and soul.  We hope that you get a chance to enjoy a nice vacation.  What’s everyone doing this summer?

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

~Teresa

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