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

Blog #246~ DS-ASD at the NDSC Convention 2022

Blog #246~DS-ASD at the NDSC Convention 2022

Being a parent of a child with a dual diagnosis of Down syndrome and autism (DS-ASD), can often feel isolating. The complex needs of speech deficits, sensory and behavior concerns related to co-occurring DS-ASD make parents feel like they don’t fit into the Down syndrome or autism support groups. For the longest time I avoided going to the Down syndrome functions and conferences for this very reason. I know that other families have felt the same about not fitting into the DS groups. It is a lonely feeling. My son Nick is 28 years old and has DS-ASD. What I have since learned is that you have to align yourself with like minded individuals who truly understand this unique journey. In addition, it’s important to process the secondary diagnosis of autism with Down syndrome and get to a place of acceptance in your own time. While this path is different, there is both help and hope now available compared to 15+ years ago when Nick got the secondary diagnosis.

There was much to celebrate at the National Down Syndrome Congress 50th Annual Convention (NDSC) held in New Orleans last month in person. This week, I want to share this experience and why it was so important for DS-ASD families and those wanting to learn more about a dual diagnosis.

Since the publication of my book, A New Course: A Mother’s Journey Navigating Down Syndrome and Autism in 2020, I have been presenting information about my journey with Nick and providing strategies, tools and interventions to support individuals with DS-ASD.

Click here to order:  https://amzn.to/2W3Un6X

The Deep Dive presentation was a comprehensive presentation: Down Syndrome and Autism Spectrum Disorder Clinical Features and Treatment and Intervention Strategies, was led by physician Dr. Nicole Baumer, psychologist Dr. Lina Patel and myself.

This presentation provided valuable information on how to tease out signs and symptoms of what autism looks like in individuals with Down syndrome. In addition, we offered many strategies and interventions to support communication, behavior and sensory needs associated with co-occurring DS-ASD.

The NDSC exhibit hall was a high energy whirlwind of agencies and rock stars of the Down syndrome world. The Down Syndrome-Autism Connection booth was busy with our staff and board of directors answering questions, listening to stories and connecting with others wanting to know more about a dual diagnosis.

The Down Syndrome-Autism Connection: A Lifeline for a Lifetime more at http://ds-asd-connection.org/
The Down Syndrome-Autism Connection’s Rock Stars: Executive Director Charlotte Gray and President, Jeanne Doherty fielding questions and networking at the NDSC Exhibit Hall booth.

Some more of the Rock Stars of the Down Syndrome World at NDSC Convention 2022:

Heather Avis author, podcaster and advocate with The Lucky Few more at https://www.heatheravis.com/about
Noah’s Dad and Hope Story Advocates Rick and Abbie Smith more at https://hopestory.org
Advocate and author Tim Harris more at https://www.globaldownsyndrome.org/news-community/quincy-jones-exceptional-advocacy-award-recipients/tim-harris/

Sophia Sanchez, actress, model, author, advocate and influencer more at http://www.sofia-sanchez.com/bio
Trailblazer, advocate and author David Egan more at https://davideganadvocacy.com
GiGi and Nancy Gianni of Gi’Gi’s Playhouse. More at https://www.gigisplayhouse.org/
Ruby’s Rainbow provides scholarships to individuals with DS for higher education. More at https://rubysrainbow.org/about/

The Down Syndrome-Autism Connection hosted a panel discussion, DS-ASD The Real Deal a Parent Panel, which provided a safe space to ask questions, share ideas and strategies. The Down Syndrome-Autism Connection is the gold standard, national organization serving the DS-ASD community since 2007. More at http://ds-asd-connection.org/

The Down Syndrome-Autism Connection Parent Panel at NDSC 2022

The final presentation that I gave was, a DS-ASD 3-21 Toolkit of Strategies which offered practical ideas, take home strategies and ways to support individuals with a dual diagnosis. These included the three areas impacted by autism in Down syndrome including communication, behavior and sensory needs. One example of a strategy that I suggested, is to teach your child the concept of time and having to wait. How do you teach this?

*Use visual supports like PECS icons/or a clock picture and non-verbal gesture of pointing to your wrist, indicating a wrist watch.

*Pair this with a timer app like Countdown Timer or Time Timer.

* Always introduce this concept by teaching first in low stress environments and build from there. Ex/ Low stress: Waiting for shower water to warm up: “Good waiting” and point to wrist. Then, build to higher stress: Child is hungry and there is extra long line at Taco Bell. You see that they are impatient and showing stress. Point to wrist and/or set the timer app, reinforce “Good listening Nick thank you for waiting, yay”!

This is just one of many ideas from my DS-ASD 3-21 toolkit. 🙂

Teresa Unnerstall, author, speaker and advocate at NDSC presentation

I would like to commend the National Down Syndrome Congress for including these important DS-ASD presentations at the NDSC convention. It is so critical for families and professionals to see what autism looks like in Down syndrome and how to effectively provide interventions, strategies and support for the additional challenges for DS-ASD individuals and their families.

Thank you NDSC for allowing me the opportunity to share information, help and inspire others who are on this journey. The DS-ASD community appreciates having a representation at the NDSC convention and in your organization.

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

~Teresa

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Posted in Dual Diagnosis Down syndrome and autism, Education and Special Needs, IEP (Indivdualized Education Plan), Parenting Special Needs, Resources for Special Needs

Blog #236~Need IEP Help? The New Go-To Guide: Special Education Savvy

Blog #236~Need IEP Help? The New Go-To Guide: Special Education Savvy

IEP Season is here, do you need help understanding the process and how to become a better advocate for your child? I’ve got the resource for you, just in time for IEP season. It is the new go-to guide, Special Education Savvy: A Mom’s Guide to Mindset and Effective Advocacy Throughout the IEP Journey and it’s a must read! I received an advanced reader copy of Mary Beth Gilliland, M.ED book which was just released last week. The author literally takes you the reader, by the hand and guides you step by step on the IEP process.

IEP stands for Individual Education Plan, which is a written document outlining the program of special education instruction, supports and services that a student with a disability needs to make progress in school. IEP’s can be complicated and daunting, especially for moms who are new to navigating this journey with their child. I was one of those moms, my son Nick, has co-occurring Down syndrome and autism (DS-ASD). This new book, Special Education Savvy is the book that I wish I had in my hands 27 years ago.

Special Education Savvy stands out in my mind as different than other special education/ IEP/advocacy books for several reasons. First of all, the author Mary Beth Gilliland feels like a mentor that is sitting right there with you at an IEP meeting. She provides sections that include basic special education 101, advocacy strategies, IEP meeting tips and more. You will also learn how to handle the uncomfortable and often challenging encounters that parents may face when IEP’s, when aren’t being followed or their child is not making progress. Second, this book is easy to read especially for busy moms who are juggling a multitude of responsibilities. The technical jargon associated with special education is clearly spelled out making it easier to understand. Mary Beth also breaks down every aspect of the IEP process, so you don’t feel overwhelmed. Finally, as the title suggests you come out of each chapter feeling confident with a savvy mindset ready to advocate for your child.

I found myself shaking my head, yes as I read each chapter. Mary Beth uses clever analogies to make important points about a student’s rights along the technical stuff like IDEA (Individuals with Disabilities Education Act) and FAPE (Free and appropriate public education). Again, she clearly explains these tough areas and makes the information parent friendly.

As a DS-ASD consultant, advocate and author of A New Course: A Mother’s Journey Navigating Down Syndrome and Autism (available at https://amzn.to/2W3Un6X ) I highly recommend Special Education Savvy. It is the ultimate instruction manual for understanding and advocating for your child’s IEP. You will feel more educated and empowered with this well written toolbox of strategies. Ultimately, this knowledge will help to ensure your child receives the services and support to be successful in school.

That’s what is in my noggin this week. Now, I am off to find a cute pair of yellow flats and get savvy for April to advocate about Autism Awareness Month.

~Teresa 🙂

Follow us on social media on Facebook and Instagram @ Down Syndrome with a Slice of Autism and on Twitter @tjunnerstall.

Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Education and Special Needs, Resources for Special Needs

Blog #231~A Book Launch During Covid-19

Blog #231~A Book Launch During Covid-19

May 5, 2020 was going to be one of the most important days of my life. This was the date I planned to launch my book, A New Course: A Mother’s Journey Navigating Down Syndrome and Autism.

A New Course Book Cover multiple books

(Order your copy of A New Course) @ https://amzn.to/2W3Un6X 

Read chapter one of a New Course for FREE @ https://teresaunnerstall.com

May 5th was the perfect date, tying in Cinco de Mayo and Taco Tuesday to the launch party and book signing. I had a beautiful venue lined up complete with a taco bar and cocktails. I chose this date because it was just a week or so before Mother’s Day and at the height of  the IEP season. Two days later, we had plans to fly to Arizona where I would speak at the National Down Syndrome Society (NDSS) Adult Summit.

Then everything we planned came to a screeching halt……..

covid 19 pandemic

My son Nick is 26 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). His adult developmental day training program like all the schools, shut down in March. Across the country we all sheltered in place. There was no break–no respite care–no where to go and no way out. The lockdown was a moveable line that just kept pushing further with each passing month. Nick didn’t understand why he had to stay home, he became frustrated with the lack of structure and limitations. You can read about this experience with Nick and sheltering in place, by clicking below:

This is an article I wrote for The Mighty about this experience with my son, Nick: https://www.yahoo.com/lifestyle/navigating-covid-19-lockdown-son-173142879.html

So, I rolled up my sleeves and focused on marketing. A hybrid publisher does the bulk of the leg work, taking the pressure off the author and ensuring that the particulars are taken care of properly.

Here’s a breakdown of the book marketing plan:

*Identify key influencers and offer an advanced reader copy of the book in return for promoting and endorsing the book.

*Create and build followers on A New Course Book Launch Party group on Facebook.

*Do consistent posts on social media including Facebook, Instagram and Twitter (links listed below).

*Closely follow the marketing plan outlined by my publishing team using the Trello Board.

*Submit articles to magazines in related field and to Bublish.

*Find podcasts in the field that may be interested in DS-ASD and the book.

*Visit my author page at https://www.teresaunnerstall.com to view all the News/ Events including virtual events, promotions, podcasts and accolades.

As for the actual launch date on May 5th we had to go to plan B.  Here is what that looked like:

*Go live on Facebook three times doing author Q&A’s and reading chapter excerpts.

*Promotional giveaways of swag bags– prize drawings for friends who share & tag posts and pictures of themselves (or their pets) with my book.

*Small gathering of seven people outside, socially distant at 6 feet apart–with  a parade featuring the local fire department. (Nick has a thing for fire alarms–all 55 pulls since 3rd grade).

*Zoom Cinco de Mayo parties with margarita toasts.

Here are some pictures highlighting book launch day 🙂

As you can see, a book launch can be done even during a Covid-19 Pandemic lockdown. Like so many other major events in 2020 such as graduation ceremonies, proms, sporting events, birthdays and other special occasions–you find ways to make the best lemonade out of lemons–or margarita’s on Cinco de Mayo. 🙂

I would like to thank Alexa Bigwarfe and the publishing team at Kat Biggie Press, https://katbiggiepress.com for laying out an excellent blueprint on the Trello Board. This board carefully organized media materials, a marketing plan and submissions from the publishing team. My publisher also lent support with social media and guidance through all phases of publishing journey. One lesson I learned from Alexa Bigwarfe and my dear friend and best-selling author, Lisa McCubbin is this:

The marketing and outreach doesn’t stop after your book is published. Keep pushing to find new avenues to promote and market your book, because if you stop–your book sales will die. 

It’s been three months since my book came out and I am pleased to announce that A New Course has 56 Five Star Amazon reviews and it was a top non-fiction book on Library Bub in July. It is being well received by parents, extended family & friends, educators, therapists and physicians across the country and globe. Top leaders and authors in the field of Down syndrome and autism are endorsing A New Course! Best of all, my book is getting into the hands of readers and helping families understand how to navigate a dual diagnosis, validate their feelings, struggles and offering hope for the future with their child.

Finally, I want to thank my family, friends and launch team who supported me through this writing, blogging and publishing journey.  I appreciate the pep talks, shares, tags, pictures and book reviews submitted on Amazon and Goodreads. The BEST way to thank an author is to leave them a BOOK REVIEW on Amazon or Goodreads! The more reviews I get, the better chance my book can get into the hands of more readers–Please keep submitting your reviews, they are critical for book sales! You can still join in on the action, get the inside scoop, backstories and a chance to win reader appreciation prizes on our Facebook group: A New Course Insiders Book Club. 

So that’s how we managed to launch a book with success during the Covid-19 Pandemic and make the most out of an impossible situation here in 2020. That’s what is in my noggin this week. Be well and thank you for being a part of this journey with Nick and my book A New Course.

~Teresa 🙂

LOGO TRANSPARENCY (5)

Follow Nick:

Facebook: https://www.facebook.com/downsyndromewithasliceofautism/

Instagram: https://www.instagram.com/downsyndromewithasliceofautism/

Twitter: https://twitter.com/tjunnerstall

 

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

Exclusive Author Interview- A New Course: A Mother’s Journey Navigating Down Syndrome and Autism

Exclusive Author Interview- A New Course: A Mother’s Journey Navigating Down Syndrome and Autism

A New Course Book Cover multiple books

My book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism”  will launch next week on May 5, 2020! Pre-order your copy now on Amazon—  https://amzn.to/2W3Un6X My mission as an author and dual diagnosis consultant– is to make this journey smoother for families navigating a dual diagnosis of Down syndrome and autism (DS-ASD).

This week, an exclusive interview I did with Leslie Lindsay, the award-winning author of SPEAKING OF APRAXIA (Woodbine House, 2012). Leslie has been awarded as one of the top 1% reviewers on GoodReads and recognized by Jane Friedman as one of the most influential book reviewers. Since 2013, Leslie has interviewed over 700 bestselling and debut authors on her author interview series. Follow her bookstagram posts @leslielindsay1. More about Leslie following interview below.

Check out this exclusive interview and get the behind the scenes scoop about my book, A New Course: A Mother’s Journey Navigating Down Syndrome and Autism:

https://leslielindsay.com/2020/04/27/wife-mother-and-advocate-teresa-unnerstall-dives-in-head-first-with-her-all-hands-on-deck-approach-to-navigating-an-autism-downs-syndrome-diagnosis-in-her-new-book-a-new-course/

Leslie Lindsay Book Picture

Artistic photo of book cover designed and photographed by Leslie Lindsay. Join her on Instagram @leslielindsay1 #alwayswithabook for more like this.

Thank you to Leslie Lindsay for a great interview and all your support! 🙂 Next week, I’ll post the virtual book launch activities here on the blog and social media sites listed below. Join A New Course Book Launch page on Facebook to get the latests updates in real time!

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

~Teresa

Follow on Social Media:

Facebook, Instagram and Pinterest @Down Syndrome with a Slice of Autism

Twitter @tjunnerstall

 

 

 

 

 


 

Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Parenting Special Needs, Resources for Special Needs

Blog #232~Online Links for Special Needs Parents

Blog #232~Online Links for Special Needs Parents

Support hands

This week, I’ve provided a list of online links, to support special needs parents. These links are for parents of individuals with Down syndrome, autism, a dual diagnosis of Down syndrome and autism (DS-ASD) and other intellectual and developmental disabilities:

Down syndrome support links:

Down syndrome awareness ribbon

http://www.ndss.org The National Down Syndrome Society is the national advocate for the value, acceptance and inclusion of people with Down syndrome.

http://www.ndsccenter.org The country’s oldest national organization for people with Down syndrome, their families and the professionals who work with them.

http://www.nads.org NADS is the National Association for Down syndrome and a solid support group in the Chicago area. There is also more links for dual diagnosis of Down syndrome and autism here (including a complete list with signs and symptoms for parents wondering if their child has more than just Down syndrome).

http://www.gigiplayhouse.org Down syndrome Awareness Centers all over the Midwest and expanding to New York, NY and Mexico. These centers provide play, fitness and social groups.

http://www.noahsdad.com Support and inspiration for parents who have a baby or child with Down syndrome. There is some great information and useful tips and links and positively focused. Noah’s Dad has also launched Hope Story to raise awareness and provide additional support.

https://hopestory.org Hope Story – Down Syndrome Diagnosis Support and Resources 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.

http://www.futureofdowns.com Run by parents of children with Down’s syndrome. Covers a wide range of topics regarding babies and children with Down’s syndrome, pregnant and in need of advice on screening and tests or have just received a positive diagnosis following an amnio or CVS.

Autism support links:

autism ribbon

http://www.facebook.com/autismdiscussionpage This page was developed by Bill Nason, MS, LLP to discuss tools that help children on the spectrum. This site provides solid information and strategies related to autism.

http://www.autismspeaks.org Autism Speaks provides information and advocacy and good general information and links.

http://www.autism-society.org The Autism Society improves the lives of all affected by autism through education, advocacy, services, research and support.

http://www.tacanow.org Talk About Curing Autism and has a ton of links and articles along with coffee groups.

http://www.myautismteam.com Online support group for parents to share daily trials, triumphs, questions and recommendations.

http://www.mayer-johnson.com Boardmaker software for assistive technology/AAC devices.

http://www.teeach.com Information on TEEACH materials

More links for special needs parents:

https://thearc.org The Arc: For People With Intellectual and Developmental- Information and referral services, individual advocacy to address education, employment, health care and other concerns, self-advocacy initiatives, residential support, family support, employment programs, leisure and recreational programs.

https://www.parentingspecialneeds.org Parenting Special Needs Magazine share information and inspiration for parents of children with special needs.

https://www.woodbinehouse.com/ Publisher of the Special-Needs Collection…books for parents, children, teachers, and other professionals.

https://www.catherinewhitcher.com IEP Coach Catherine Whitcher works with families and educators, provides IEP coach training, blogs and podcasts to help navigate IEP’s.

http://www.pottytrainingsolutions.com Gathers the most common problems and their solutions to help take the stress out of this major milestone.

http://www.easterseals.com Easter Seals offers programs, training and equipment for families.

wwww.bridges4kids.org Great, practical resources for special needs families.

http://www.specialedadvocacy.org Advocacy site for parents and teachers

Down syndrome and autism links:

DS-ASD Ribbon

https://http://www.nickspecialneeds.com My site provides solid information on topics specific to a dual diagnosis of Down syndrome and autism (DS-ASD), including supports, communication and speech/feeding issues, occupational therapy, behavior/ ABA and much more.

http://www.ds-asd-connection.org Offers good information related to a dual diagnosis of Down syndrome and autism.

http://www.theupsideofdowns.org Provides support, advocacy and information specific to a dual diagnosis of Down syndrome and autism.

Facebook groups for DS-ASD There are several Facebook groups directly related to Down syndrome and autism. These groups are a safe place to share information, ask questions, and help each other. Visit my Facebook page- Down Syndrome With a Slice of Autism. You can also type in Down syndrome and autism into the search box to access additional groups.

Online support groups and links provide information, assistance, resources and encouragement, for parents who have a child with Down syndrome, autism, a dual diagnosis of Down syndrome and autism (DS-ASD) and other intellectual and developmental disabilities. As a parent, remember you don’t have to navigate the special needs path alone, help is out there!

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

Follow us on Social Media:

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, Resources for Special Needs

Special Needs Summer Program Ideas

Special Needs Summer Program Ideas

This week, I’ve provided a list of some summer program ideas and links for children with special needs. My son, Nick is 25 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). Over the years he has participated in a variety of programs.  Here is a blog I wrote a couple of years ago, highlighting some great programs for individuals with special needs:

Click here to view:
https://nickspecialneeds.com/2017/06/12/blog-176-special-needs-summer-recreation-programs/

Honesty, I was uncertain about attempting some of the programs, given Nick’s dual diagnosis of DS-ASD. It’s important to at least try new things and keep expanding your child’s horizons. As the saying goes, “you never know, until you try it”. 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 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