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

Blog #224~Using Social Stories for Behavior Management

Blog #224~Using Social Stories for Behavior Management

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

Big Guy Nick 🙂

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

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

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

iPad Social Story:

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

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

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

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

~Teresa

Follow Nick:

Facebook and Pinterest @Down Syndrome With Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

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

DS-ASD Fall Update

DS-ASD Fall Update

fall pumpkins

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

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

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

NIU Football Game, with Dad. Go Huskies!

NIU football game

Pumpkin Patch with Miss R….

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

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

Go Bears!

Nick Bears Jersey

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

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

~Teresa 🙂

Follow Nick:

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 #223~When It’s More Than Just Down Syndrome

Blog #223~When It’s More Than Just Down Syndrome

Parents of a child with Down syndrome will post questions online, about the possibility of their child also having autism.  Their questions are, what are the signs and symptoms, and also what is the benefit of having a secondary diagnosis of autism with the primary diagnosis of Down syndrome (DS-ASD)?  Having navigated the path of a dual diagnosis of DS-ASD for 24 years and working as a dual diagnosis specialist and consultant, I can attest to the benefits of getting the secondary diagnosis of autism along with Down syndrome.

Do you suspect that your child, student or client with Down syndrome may also have autism?  Learn about this:

*The signs and symptoms of DS-ASD

*The benefits getting an evaluation and secondary diagnosis of autism related with Down syndrome

*What additional services are available to support a dual diagnosis of DS-ASD

*Resources and support related to having a dual diagnosis of DS-ASD

Click here to learn find out: @https://nickspecialneeds.com/2016/09/12/blog-155more-than-just-down-syndrome/

Getting the secondary diagnosis of autism along with Down syndrome was the key to unlocking the door for more specialized training, communication and behavior support, funding and respite care for my son, Nick.  It also lead me to find support groups that are dealing with tough issues that are unique to children and adults with a dual diagnosis of Down syndrome and autism.

magic key       down syndrome and autism intersect

Please feel free to share this blog post and any others that I’ve written.  My goal is to enlighten, educate and provide support for parents, families, professionals on navigating the path for children and adults, with special needs.  Message me if I can be of help, and be sure to check out our social media sites below.  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, Resources for Special Needs

Blog #222~Dear Doctor,A Down Syndrome Diagnosis is a Hope Story

Blog #222~Dear Doctor, A Down Syndrome Diagnosis, is a Hope Story

What is the right way for a doctor to deliver the news that your baby has Down syndrome either pre-natal or at birth?  Over the weekend, I received a link from Nothing Down, called Dear Doctor http://www.nothingdown.org/ The short film link, interviewed parents who shared their experiences with their doctor.  The delivery of the news of a Down syndrome diagnosis was often cold, stoic, and grim.  In some cases, the doctors told the parents what their child couldn’t do, while others were offered the option to terminate the pregnancy.  So how should a doctor deliver the news to parents that their baby has Down syndrome? Educating medical professionals, communities, and advocating for inclusion and acceptance, are some of the goals during the month of October, which is Down Syndrome Awareness Month.  The more you understand Down syndrome, the less fear you will have about the navigating the challenges associated with the diagnosis.

DS-Awareness-Month

I’m excited to share a new program that is going to change the way many medical professionals will deliver a pre-natal or birth diagnosis of Down syndrome.  It’s called Hope Story!

Hope Story’s Mission:

“Hope Story exists to give support, encouragement and hope to parents whose child have received a Down syndrome diagnosis; to provide free resources to the medical community to help them deliver a Down syndrome diagnosis, and to find ways for parents of children born with Down syndrome to use their unique story to bring hope to others.”  

Hope Story Helps 3 Main Groups:

*Parents whose child received  a diagnosis of Down syndrome.

*Parents who have a child with a diagnosis of Down syndrome.

*Medical Professionals

Hope Story will be providing kits to advocates who will partner with medical professionals.  Hope Advocates will inform, educate and allow doctors to get to know someone with Down syndrome on a personal level.  Tools in the Hope kit contain valuable information on how to deliver a diagnosis of Down syndrome, and a preferred language guide to help talk about Down syndrome with dignity, respect and hope.  In addition, the Hope booklet addresses concerns a new parent may have about Down syndrome.  Other tools include welcome letters, announcements, business card and  training videos for Hope advocates.

For more information on Hope Story click here:   @https://hopestory.org/about/

I’m looking forward to being an advocate for Hope Story, and the opportunity to work with medical professionals on delivering a positive pre-natal or birth diagnosis of Down syndrome.  Giving hope to other families who have a child with Down syndrome, has been the fuel for my writing for many years.   One thing I wish someone would have told me 24 years ago, when my son, Nick was born is this:

DD are like comas

Babies and children with Down syndrome have to work harder with physical, occupational and speech therapy to hit developmental milestones, and yes it may take longer, but they will and it hit them, and it will be grand!

My son Nick, age 24 🙂

Nick Key West

As we close to the end of October and Down Syndrome Awareness Month, I feel optimistic about the future of  individuals with Down syndrome.  We are moving beyond awareness, to acceptance and inclusion in society.  The future looks much brighter, with more opportunities for individuals with Down syndrome.  I’ve highlighted many success stories all month in my blogs, and social media listed below.  Education and understanding about Down syndrome is the key, and Hope Story is taking charge to help medical professionals and parents.  When you have knowledge and hope, the fear subsides.

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

~Teresa

Follow Nick and view more about Hope Story and the Dear Doctor film on social media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

Posted in Down syndrome, Down Syndrome Awareness, Education and Special Needs, Resources for Special Needs

Blog #221~Inclusion in a General Education Classroom for Students with Down Syndrome

Blog #221~Inclusion in a General Education Classroom for Students with Down Syndrome

Down syndrome awareness ribbon

October is Down Syndrome Awareness Month.  An individual with Down syndrome can be included in a general education classroom with the right support, accommodations and curriculum modifications.  This requires collaboration with the school team and understanding the needs of the student.  Inclusion education happens when children with and without disabilities participate and learn together in the same classes.  How can you advocate for an inclusive education environment for a student having Down syndrome?

*Inclusion in a general education classroom starts with a school team who is aware and understands what the experience can look like.  If the school does not support inclusion, the parent (and bringing an advocate on board) can help to educate the staff.  There is no one size fits all on inclusion, as each student is individual and unique in their needs. Inclusion is not a place, but rather an experience. Finding the right teachers, who are willing to set an open environment in the general education classroom is also a key ingredient to the success of inclusion.

Here are some examples of how inclusion can work:

http://www.friendshipcircle.org/blog/2014/02/05/10-examples-of-inclusion-for-those-who-need-to-se

Educate your school and community by hosting a screening for Inclusive Schools Week.  “Inclusive Schools Week is a proud partner with INTELLIGENT LIVES, the groundbreaking new documentary by Dan Habib. Narrated by Academy-award winning actor Chris Cooper, the film stars three pioneering young adults with intellectual disabilities – Micah, Naieer, and Naomie – who challenge perceptions of intelligence as they navigate high school, college, and the workforce. The film can now be screened in every community across the USA – host your own screening for Inclusive Schools Week! Intelligent Lives can help you advocate for change, raise funds for your organization, and open doors to inclusive education and employment for people of ALL abilities.” Go to http://www.intelligentlives.org to watch the film trailer and to learn how to host a screening in your communitye-it-to-believe-it/

Watch the trailer:  https://intelligentlives.org/trailer

*Create a one page profile sheet of your child to share with the school team and class.  There are many great ideas on Pinterest to create this.  

Here are some suggestions with examples on what to include:

-Picture of student

-Strengths (counting, matching, visual learner, receptive language, funny, wants to work)

-What works for student (visual schedule, patience, positive reinforcement, reminders before transitions)

-What doesn’t work for the student (sudden changes in schedule, taking something away, saying no or talking to firmly)

-What the student enjoys (music, making friends, Starfall computer game, dancing)

What the student needs (checklists, visual schedules, motor breaks, sensory break area, etc.)

*Inclusion works best with a solid Individualized Education Plan (IEP) and when the student is supported with a classroom aide/paraprofessional.  

Nick work aid

*Inclusion works best when the IEP includes all needed accommodations and modifications in the curriculum.  Accommodations are the tools needed for the student to succeed in the classroom.  Some examples might include a special pencil grip, nubby seat cushion, visual timer, calculator, built in motor breaks, communication device or picture exchange system (PECS) book.  Modifications to the curriculum allow the student to learn the grade level material , but simplified.  This helps the student learn at their own level what is most meaningful for them.  Goals in the IEP should be driven to promote further education, independence and future employment skills.

Here are two books that I recommend for learning more about how inclusion works for individuals with Down syndrome:

Inclusion in ActionWho's The Slow Learner

As I mentioned in last week’s blog post, Woodbine House also has many books about teaching reading and math skills for individuals with Down syndrome.  This month Woodbine House is offering a 30% discount on these books:

Click here to view the selections https://www.woodbinehouse.com/

Inclusion in a general education classroom can work for individuals with Down syndrome.  It benefits all students, and promotes a since of community and acceptance, that individuals with intellectual and developmental disabilities desire.  With the right attitude, support, accommodations and modifications, inclusion in a regular classroom setting can be a rewarding and successful experience for individuals with Down syndrome, their peers and the school staff.

That’s what is in my noggin this week.

~Teresa 🙂

Follow my son Nick who is 24 years old and has a dual diagnosis of Down syndrome and autism:

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, 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

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