Posted in Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism, Resources for Special Needs

Blog #220~Down Syndrome Good Reads

Blog #220~Down Syndrome Good Reads

October is Down Syndrome Awareness Month.  This week, I want to highlight books associated with Down syndrome.  You can click on my resource book shelf page, to view a comprehensive list of books:  https://nickspecialneeds.com/resource-book-shelf/

Woodbine House is the gold standard for resource books related to Down syndrome and other intellectual and developmental disabilities for parents, family members, children, teachers, and other professionals.  This publishing company has over 40 books on Down syndrome with a  30% discount this month! http://www.woodbinehouse.com/product-category/down-syndrome/

Woodbine House Sale

There are a lot more books on Amazon, related to Down syndrome.  One that caught my eye, with a 5 star rating and solid reviews is The Parent’s Guide To Down Syndrome by Jen Jacob and Madra Sikora.  The reviews for this book state that it is upbeat, current, informative, insightful, and a fun and easy read:

parents guide to DS book

https://www.amazon.com/Parents-Guide-Down-Syndrome-Information/dp/144059290X/ref=sr_1_1?ie=UTF8&qid=1539620279&sr=8-1&keywords=The+parents+guide+to+Down+syndrome

In addition to books for parents, teachers and professionals, there are many children’s books about Down syndrome both on Amazon and in my resource book shelf link, that I listed above.

 

Promoting acceptance and inclusion are two goals of Down syndrome Awareness Month.  Many parents and advocates do presentations at schools and in their community, incorporating book reads and power point presentations to educate others.

Donating books to local public and school libraries is a great way to spread the word about Down syndrome.  Many Down syndrome support groups provide materials, like bookmarks and calendars, that can be distributed as well.  In addition, these support groups often provide training to become a speaker and advocate.  Check with your local support group to see if they have a resource libray with books, tech and other resources to help families who have a child with Down syndrome.

Gifts book cover

The books and links I provided here, will help parents, family members, teachers and professionals better support a child having Down syndrome.  In particular, the Woodbine House books provided me with encouragement, understanding and practical tips for growth/medical management, academic skills in reading/math, gross and fine motor development.  This gave me more confidence to better advocate and help my son, Nick who is now 24 years old.

I hope these good reads provide a lens on the subject of Down syndrome to further educate, and promote acceptance and inclusion.  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 Down syndrome, Down Syndrome Awareness

Blog #219~ The Faces of Down Syndrome

Blog #219~The Faces of Down Syndrome

The faces of Down syndrome are more prominent in 2018, than they were 24 years ago when my son, Nick was born.  Acceptance and inclusion are two things we advocate everyday, and especially in the month of October, which is Down Syndrome Awareness Month.

Down syndrome awareness month

This week I want to highlight some of the faces of individuals with Down syndrome who are making a difference, by advocating acceptance and inclusion.  There are more models with Down syndrome in the media, thanks to companies like Target and all the way up to New York fashion week.  In addition, television shows are featuring actors with Down syndrome.  Trailblazers are advocating for job opportunities and making a difference.  Here are some of the faces of individuals who have Down syndrome, and advocates who are paving the way.

btway

*A&E’s Emmy winning series Born this Way 🙂

“Winner of the 2016 Emmy Award for Outstanding Unstructured Reality Program, Born This Way follows a group of seven young adults born with Down syndrome as they pursue their passions and lifelong dreams, explore friendships, romantic relationships and work, all while defying society’s expectations.  In their willingness and courage to openly share their lives, through a lens that is not often shown on television, we learn they have high hopes just like anyone else. The series also gives voice to the parents, allowing them to talk about the joy their son or daughter brings to their family, and the challenges they face in helping them live as independently as possible”.

Read my exclusive interview with Sandra Assismotos McElwee (author of Who’s the Slow Learner? A Chronicle of Inclusion & Exclusion) and mother of cast mate Sean McElwee here: https://nickspecialneeds.com/?s=born+this+way

*CNN’s Hero of the Year Amy Wright of Bitty and Beau’s Coffee 🙂

bitty and beau coffee shop

CNN Heroes is a television special created by CNN to honor individuals who make extraordinary contributions to humanitarian aid and make a difference in their communities. Amy Wright started a grass-roots movement, opening up Bitty & Beau’s Coffee, which is located in Wilmington, NC. National statistics have shown that 70% of people with intellectual and developmental disabilities are unemployed. Her mission is to provide purposeful jobs that bring the community together, and helps people with and without disabilities to spend time together.

Read my blog about Bitty and Beau’s Coffee: https://nickspecialneeds.com/?s=bitty+and+bo

*Firestarter Advocating for Inclusion on Capitol Hill David Egan 🙂

Firestarters

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

David-Egan-Capitol-Hill-2011

Read more about this Firestarter David Egan and co-author Paul Eder in my exclusive interview at this link: https://nickspecialneeds.com/?s=firestarter

*We are seeing more actors and models with Down syndrome in prominent roles! 🙂

Chris Burke was a trailblazer starring in the TV series, Life Goes On:

Chris Burke 2

Lauren Potter star of Fox’s hit show Glee:

potter27.jpg

Jamie Brewer stars in American Horror Story:

American Horror Story jamie Brewer

Madeline Stuart and Maria Avila are changing the face of beauty and diversity in the world of fashion, both have walked at NY Fashion Week!

madeline stuart    maria avila

*2018 Gerber Spokes Baby Lucas Warren 🙂 

Gerber baby 2018

Read more about 2018 Gerber Baby, Lucas in my blog: https://nickspecialneeds.com/?s=gerber+baby

It’s wonderful to see more of these beautiful faces in the media.  How amazing to read about advocates who are opening up doors for employment and being applauded for their efforts!  Individuals with Down syndrome have goals and dreams, and want the same things as everyone else.  They need opportunities and to be included without barriers.  Let’s move beyond awareness about Down syndrome, towards acceptance and inclusion!

That’s what is in my noggin this week.

~Teresa 🙂

Follow my son, Nick where you will find more stories and faces of DS:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

Posted in Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism

October is Down Syndrome Awareness Month

October is Down Syndrome Awareness Month

Down syndrome awareness ribbon

October is Down Syndrome Awareness Month.  During this month my goal is to shine a light on individuals with Down syndrome, by celebrating abilities, spreading awareness and advocating for acceptance and inclusion.  I am lucky enough to celebrate and be an advocate everyday, with my son Nick.  He is 24 years old and has a diagnosis of Down syndrome and autism.

My son, Nick vacationing in the Florida Keys 🙂

Nick Key West

My work and writing has been centered around promoting better understanding of individuals with Down syndrome and autism.  Understanding and acceptance, with a focus on an individuals abilities (rather than disabilities), will lead to a more inclusive viewpoint in our society.  A society that promotes inclusion, will open up more doors, that lead to better opportunities in school, work and leisure activities in the community.

For more information about Down syndrome click here: https://www.ndss.org/about-down-syndrome/down-syndrome-facts/

Please use and encourage person first language.  Down syndrome doesn’t define the individual.  An individual is born with Down syndrome, they are NOT Down syndrome, or Down’s.  We are trying hard to break these barriers and stereotypes and eliminate the use of these and the R-word.  I wouldn’t change my son with Down syndrome for the world.  But I want to change the world for him, and other individuals who have Down syndrome, like my 9 month old great-nephew, Gannon.  This journey raising my son, has not been easy, but it has changed me for the better!  I am one of the #lucky few! 🙂

Down syndrome tour guide

I look forward to sharing and celebrating the remarkable abilities and accomplishments of individuals with Down syndrome this month.  Be sure and follow our social media sites below to capture these inspiring stories.  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, Parenting Special Needs

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

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

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

Friendship Beatles

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

hands and heart pic

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

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

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

babysitter for autism

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

friends therapy

A parent of a child with special needs, relies on friends that stand with us!  They listen, understand and share together with us.  We can’t do it alone, and our friendships sustain and keep us strong.  That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram @nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

Posted in 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:

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

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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.

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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