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

Blog #238~Autism: Welcome to My Life… Sleep Number is Zero

Blog #238~Autism: Welcome to My Life… Sleep Number is Zero

Autism Acceptance and Awareness Month is winding down, but for countless families living with autism it will continue beyond April, and often includes a sleep number of zero. That is the opening chapter of the book, Welcome to My Life: A Personal Parenting Journey Through Autism by author Laurie Hellman. My son Nick, is 27 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). I am quite familiar with sleepless nights followed by the fog and exhaustion that comes with autism. But this book is much more than sleepless nights. The author takes you through a journey that is a honest portrayal of what autism is like, often raw but always filled with compassion and love.

Available on Amazon at
https://amzn.to/2Df6qbL

What I find refreshing about the book, Welcome to My Life, is that it depicts many of the aspects that families deal with when autism is profound. Author Laurie Hellman, pulls back the curtain and lets you in to see the dents in the walls, the internal, detailed pre-planning before any event outside the home and yes…..the literal shit show, because trust me it happens. I found myself nodding my head, getting teary eyed and laughing, as her stories were so relatable. Laurie’s love and determination for her son mirrors mine. Finally, there are many lessons that Laurie offers in her book:

“Skyler teaches me to be brave, strong and courageous. he’s taught me that when I am tired and feel like giving up, I can keep going.” Laurie Hellman

It was heart wrenching to read about the additional health struggles associated with Laurie’s son, Skyler. I admire how she poured over research and turned over every stone to find answers and treatment to help him. As a mother of a child with autism, I understood the feelings of grief over what might have been. In my book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism-(https://amzn.to/2W3Un6X) I wrote about all the milestones that my son missed out on, like getting his driver’s license, going to the prom and eventually heading off to college. Did you know parent’s of individuals with autism sometimes find it easier to smile and say everything is fine? Why? Because quite frankly on some days it’s just too much to unpack. When autistic kids can’t process overstimulation it can lead to meltdowns, and as a parent you are right in the path of any collateral damage. Laurie writes about how her son can’t verbally communicate so he may lash out by swatting her arm or smacking her leg…..

“On most days, I think to myself, Does he even like me?” Laurie Hellman

After 27 years of navigating DS-ASD with my son, I have learned the function of such behaviors. I cope, by putting them in the compartment of brain rewired differently with autism. I don’t take it personally, when Nick hits me anymore, because he is mostly non-verbal. I recognize that these behaviors are his means to communicate when he feels overwhelmed and not being heard.

I think that what you will learn from reading books about autism like ours, is that if you met one person with autism…. you met one person with autism. Each is a unique journey, because autism is a spectrum disorder. Autism Acceptance and Awareness Month is about understanding these journeys and different perspectives. With better understanding our society can be more kind, patient and compassionate:

“Simple acts of kindness go such a long way and can restore my sometimes-crumbling faith in humanity.” Laurie Hellman

Moving beyond Autism Acceptance and Awareness Month, I encourage you to continue to learn more about autism. Share our stories so we can make this a bigger narrative. That sleep number of zero is real, along with the challenges associated, especially when autism is profound. Understanding leads to acceptance. It means showing kindness by making some room at the table for all abilities and behaviors of autistic individuals along with their families.

That’s what is in my noggin this week.

~Teresa 🙂

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Laurie Hellman’s blog, podcast links at http://www.lauriehellmann.com

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

Blog #237~Autism Acceptance Month

Blog #237~Autism Acceptance Month

There is a shift occurring this April with Autism Awareness Month. Let’s face it autism awareness doesn’t mean much without acceptance too. It’s not just a shift in the terminology of “autism awareness” to “autism acceptance”, you may notice new symbols like the rainbow infinity taking the place of the puzzle piece imagery (as many believe that the puzzle symbol evokes a negative connotation as a problem that needs to be solved). To keep you in the loop, the rainbow infinity sign represents neurodiversity, here’s more:

Rainbow Infinity Sign represents neurodiversity

“Neurodiversity is the idea that autistic people add diversity to the world, and that disability is part of the human experience. Neurodiversity advocates oppose the idea of an Autism “cure,” and want to focus more on helpful and respectful therapies. They believe that Autistic people should be accepted in society.” Autism Acceptance Month Call to Action: Commit to Being Inclusive. – Key Assets Kentucky

Whether it’s promoting with rainbow infinity symbols or puzzle pieces I think the emphasis should be on the movement from autism awareness to acceptance. My son Nick is 27 years old and has a co-occurring Down syndrome and autism (DS-ASD). According to Autism Speaks, “Over the next decade, an estimated 707,000 to 1,116,000 teens (70,700 to 111,600 each year) will enter adulthood and age out of school based autism services.” That is a staggering statistic as autistic children grow up to become adults in need of safe housing, medical care insurance, family (inclusive and accessible) public restrooms, meaningful employment and adult day program opportunities. Acceptance requires understanding along with providing supports and accommodations.

We need to accept the fact that 1 in 54 children born in the U.S. are diagnosed with autism and they along with their families need support and opportunities to be fully included in society. What if we celebrated differences and became more understanding of individuals with autism? For my son Nick, it would mean respecting his need for routine, sameness and space, to be accepting of his need to rock, sway, flap his hands and make verbal stimming sounds to help keep himself regulated. It would also mean looking beyond these self-stimulatory behaviors to see his unique abilities and strengths.

This Autism Acceptance Month I challenge you to do more than just be aware of autism. Here are a few suggestions:

*Read and share books about autism like my book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism available on Amazon at: https://amzn.to/2W3Un6X

*Follow The Autism Discussion Page on Facebook where you will gain a better insight some of the challenges associated with autism. Bill Nason has a series of books that are toolkits to individuals with autism feel safe, accepted and competent: Autism Discussion Page on the Core Challenges of Autism: A Toolbox for Helping Children with Autism Feel Safe, Accepted, and Competent: Nason, Bill: 9781849059947: Amazon.com: Books

*Read and share books with your children and local libraries: 30 Best Children’s Books About the Autism Spectrum (appliedbehavioranalysisprograms.com)

*Donate and join autism support groups like The Down Syndrome-Autism Connection which has been in operation since 2007, and is the only non-profit in the United States dedicated solely to co-occurring Down syndrome and autism. They have given over 2,000 families around the world a place to belong. This month you can donate to my team @ https://givebutter.com/xrKt9I. Learn more about the connection at http://www.ds-asd-connection.org.

*Show kindness and respect for how autistic individuals need to process the world around them and understand that they shouldn’t have to conform to the norms when expressing themselves.

This April for Autism Acceptance Month and moving forward, I encourage you to learn more about understanding autism. Understanding leads to acceptance. Let’s celebrate unique personalities and abilities and also show compassion for the challenges and struggles faced by individuals with autism and their families.

That’s what is in my noggin this week.

~Teresa 🙂

Follow us at Down Syndrome with A Slice of Autism on Facebook and Instagram and @tjunnerstall on Twitter

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

World Down Syndrome Day 3/21/21

World Down Syndrome Day 3/21/21

World Down Syndrome Day is this Sunday, 3/21/21. “WDSD purpose is to raise awareness around the world of what Down syndrome is and the vital role people with Down syndrome play in our society. The day has been officially observed by the United Nations since 2012 and the date — always on the 21st day of the 3rd month — is meant to highlight the uniqueness of the triplication (trisomy) of the 21st chromosome, which is the cause of Down syndrome.”

World Down Syndrome Day is an opportunity for all of us to promote awareness, understanding, acceptance and inclusion.  Lack of knowledge and understanding can prevent people with Down syndrome from being accepted and included in society.  The message is simple, every individual is unique, we all have value, and everyone has the right to live a happy and fulfilling life.  I heard a great quote the other day, “Down syndrome is just another way that humanity presents itself”.  

My son Nick is 27 years old and has a dual diagnosis of Down syndrome and autism. He has taught me a multitude of life lessons. Our story has touched the lives of so many others:

Here are 3 easy ways to celebrate WDSD and promote acceptance and inclusion:

*Promote Down syndrome awareness on social media using the hashtags #wdsd #worlddownsyndromeday #downsyndromeawarness #t21 #downsyndromelove #downsyndrome #321 #abilities #inclusion #funkysocks #downsyndromerocks #downsyndromewithasliceofautsim 🙂 Don’t forget to rock those funky socks to show that different is beautiful and wonderful!

*Encourage the use of person first language.  This means saying, “a person or individual with Down syndrome”.

Do NOT say:
* “A Down syndrome baby, child or kid.”
* “Down’s baby, child or kid”
* “Down’s”
* “He or she has Downs

*Click here to: Take action – World Down Syndrome Day

Promoting WDSD on social media, encouraging the use of person first language and getting involved with WDSD events and fundraisers are wonderful ways you can be a part of of celebrating the uniqueness of individuals with Down syndrome. That’s what is in my noggin this week. Be sure and follow us on social media: Facebook and Instagram at Down Syndrome With a Slice of Autism to see how we will be celebrating!

~Teresa 🙂

Posted in Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #235~More than Down syndrome, Co-occurring DS-ASD

Blog #235~More than Down syndrome, Co-occurring DS-ASD

As a DS-ASD consultant and author of A New Course: A Mother’s Journey Navigating Down Syndrome and Autism, I am often asked why it is important to seek a secondary evaluation for autism for individuals with Down syndrome. My son, Nick is 26 years old and has co-occurring Down syndrome and autism (DS-ASD). The needs associated with DS-ASD are complex and there are several areas where you can support a child at their level.

Order your copy at https://amzn.to/2W3Un6X

Click on the blog link below to read more about co-occurring DS-ASD and how you and the IEP team can better support the additional needs associated with a dual diagnosis of Down syndrome and autism:

Blog #155~More Than Down Syndrome,DS-ASD – Down Syndrome with a Slice of Autism (nickspecialneeds.com)

There are many more services, supports and resources available for individuals with co-occurring Down syndrome and autism (DS-ASD). My mission is to help families navigate this journey easier, raise awareness, understanding and provide guidance in this journey navigating DS-ASD.

That’s what is in my noggin this week.

~Teresa 🙂

Follow on Social Media

Facebook, Instagram and Pinterest at Down Syndrome With A Slice Of Autism

Twitter @tjunnerstall

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

DS-ASD: 10 Autism Holiday Stress Tips

DS-ASD: 10 Autism Holiday Stress Tips

I am Teresa Unnerstall, a DS-ASD consultant and author of A New Course: A Mother’s Journey Navigating Down Syndrome and Autism (https://amzn.to/2W3Un6X) My son Nick is 26 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD).

Here are my top 10 Autism Holiday Stress Tips to help you navigate the upcoming holiday season. Click the link below to view:

Blog #225~10 Autism Holiday Stress Tips – Down Syndrome with a Slice of Autism (nickspecialneeds.com)

I hope you have a safe and joyous holiday. Remember to give yourself a little extra grace as we deal with the added stress caused by the Covid-19 pandemic. I have pared things down even more this year and striving for simplicity. That’s what is in my noggin this week.

Cheers and Be Well,

Teresa 🙂

Follow Us:

Facebook and Instagram at Down Syndrome with a Slice of Autism

Twitter @tjunnerstall

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

Blog #233~Down Syndrome Awareness Month

October is Down Syndrome Awareness Month. My son, Nick is 26 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). As a parent, writer and advocate, I strive to educate others to better understand more about Down syndrome and autism. Down syndrome awareness is about promoting understanding, acceptance and inclusion of all individuals with Down syndrome.

FACTS about Down syndrome from National Down Syndrome Society (NDSS):

*Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.

*There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95 percent of cases, translocation accounts for about 4 percent and mosaicism accounts for about 1 percent.

*Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.

*There are more than 400,000 people living with Down syndrome in the United States.

*Down syndrome occurs in people of all races and economic levels.

*The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women younger than 35.

*People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.

*A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.

*Life expectancy for people with Down syndrome has increased dramatically in recent decades — from 25 years old in 1983 to 60 years old today.

*People with Down syndrome attend school, work and participate in decisions that affect them, and contribute to society in many wonderful ways.

*All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.

*Quality educational programs, a stimulating home environment, good health care and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

More information @ http://www.ndss.org/Down-Syndrome/What-Is-Down-Syndrome/

Here are a few simple ways to promote Down syndrome awareness:

*Post information and stories about individuals with Down syndrome on your social media platforms.

*If you are a parent of a child with Down syndrome, send updates, pictures and tell your story to your family doctor and OB/GYN. Consider becoming a Hope Advocate- where you will get a custom hope kit to distribute to your OB/GYN and family doctor. More information @ https://hopestory.org/sign-up/

*Many local Down syndrome support groups have promotional materials, like books and bookmarks that can be distributed at libraries and schools.

*Down syndrome support groups have public speakers available to talk with schools, businesses, community groups, hospitals, and other organizations.

*Support or volunteer for local fundraisers like the Buddy Walk in your community @ https://www.ndss.org/play/national-buddy-walk-program/ . This month The Down Syndrome-Autism Connection is doing a 3-2-1 Caring and Sharing fundraiser to directly help families navigating a dual diagnosis. I will be posting more about this on social media. Find out more about this awesome support group @ http://www.ds-asd-connection.org/

*Encourage your kids to volunteer for Special Olympics and Best Buddies programs through their school.

*Always use and promote “people first language” to respectively speak about a person with a disability. Individuals with Down syndrome should always be referred to as people first.  Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Also avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.”

down-syndrome-awareness-month

My book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism is helping so many readers understand both Down syndrome and a co-occurring Down syndrome and autism (DS-ASD). It’s available on Amazon, plus there are share buttons you can utilize for social media to help spread awareness. Order and share @ https://amzn.to/2W3Un6X You can also order my book on other platforms and read chapter one for FREE @ http://www.teresaunnerstall.com. I appreciate the 70+ awesome five star Amazon reviews. Your support and sharing A New Course on your social media sites is spreading great awareness and understanding. I will be doing some more giveaways this month for everyone who shares my book on social media!

Thank you for supporting Down syndrome awareness this month! 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, 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, Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism, Education and Special Needs, Parenting Special Needs

Blog #230~Book Review: Scoot Over and Make Some Room

Blog #230~ Book Review: Scoot Over and Make Some Room 

My recent summer read– Scoot Over and Make Some Room: Creating a Space Where Everyone Belongs, by author and Instagram star, Heather Avis is a must read. She is the mother of 3 adopted children, two with Down’s syndrome and one of color.  Here is one review from her book that speaks volumes:

“In a world of divisions and margins, those who act, look, and grow a little differently are all too often shoved aside. Scoot Over and Make Some Room is part inspiring narrative and part encouraging challenge for us all to listen and learn from those we’re prone to ignore.”

Each chapter in the book Scoot Over and Make Some Room extends the challenge to make room for not only individuals with Down syndrome but way beyond to all individuals with different abilities, ethnicities, race, viewpoints and perspectives. Heather’s book is filled with humorous stories, challenges and lessons she has learned raising her 3 children, navigating IEP’s, inclusion and acceptance. But this book dives down much further, by challenging the reader to look into their own lives and broaden your understanding and compassion towards people who may be different from you.

My son Nick is 26 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). In my book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism @ https://amzn.to/2W3Un6X  there are many stories about times where I would brace myself in public. Countless times I would apologize for my son’s seemingly inappropriate behavior, and yes like Heather have a moment where the pants have gone down, 🙂

Heather tells about the “pants down in the park” episode that was highly inappropriate (and a one-time occurrence) with her daughter Macyn. I can attest to the need to be on high alert and cringing at times. Macyn is a very spirited and outgoing girl who likes to engage with strangers by waving and sometimes asking “WHATCHA NAME?” This happened once at a hip LA restaurant. This raises a good question: Is this behavior inappropriate or just different than the social norm? Why are we so fearful to interact with individuals who have an intellectual or developmental disability? Often it is fear of the unknown and being uncomfortable around someone who may speak or act differently.

Heather writes this powerful message in her book:

“We fear the unknown. And unfortunately, until we create space for people with physical and intellectual disabilities to show up exactly as they are and give them permission to interrupt our social norms, they will continue to be unknown and we will continue to be fearful,”–Heather Avis

What a profound message this is to society and lesson about acceptance. Personally, I feel that the world could use more kind interactions like saying “hi” and “WHATCHA NAME.”  Obviously, we can all agree that “pants down in the park” is an inappropriate behavior. But as Heather writes in part:

“all of us have a responsibility to shift the way we react when faced with uncomfortable social situations. All of need to scoot over and make some room for people to respond in a way we’re not use to.”–Heather Avis

One of my favorite parts of this book is the chapter entitled “Make room for the Wildflowers.” Much of what we do in life is like a garden– planted in nice, neat rows. Take for instance inside school classrooms where the desks are all lined and in sync. Is there any space for the wildflowers to grow in these tidy rows? This metaphor opens up the dialog about inclusion and different abilities working alongside in the same classroom. Can we scoot over and make some room to let the wildflowers grow amongst the seamless rows and see the value of inclusion and all abilities?  I can speak from experience that my son, Nick brought great value and taught lessons of patience, compassion and unconditional love to his peers while in the inclusion classroom setting. He continues to do so as a young adult with his interactions out in the community and at his adult developmental day training program.

There is so much more to this book and you will have to read it to find out for yourself. Scoot Over and Make Some Room is a call to action to shout the worth of people who are left out and misunderstood. Every parent, extended family member, physician, educator, pastor and others will gain a deeper understanding of how to do a better job to adjust, sit and listen in order to learn how to find a way to make room for everyone to be valued, accepted and included in our society.

That’s what is in my noggin this week.

 ~Teresa 🙂

Follow Nick:

Facebook-Instagram-Pinterest @Down Syndrome with A Slice of Autism

Twitter @tjunnerstall

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Heather Avis writes from the heart about all the things she wishes the every day person knew about inclusion. This book applies to teachers, parents, siblings and simply everyone who wants to change the way we see inclusion in the world around us.

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

DS-ASD Summer Updates

DS-ASD Summer Updates

LOGO TRANSPARENCY (5)

It’s been awhile since my last post. It’s been difficult trying to concentrate and write. My son Nick is 26 years old and has a dual diagnosis of DS-ASD. The Covid-19 pandemic has been one of the most challenging times for us. In particular individuals like my son, fail to understand what is going on, why masks are needed and personally what happened to his adult day program? Nick needs structure and scheduled activities to stay regulated.  The earliest that his program might open up is September. I am not even sure he could go back and wear a mask, much less stay socially distant.  The line is moveable, and for all of us the uncertainty is mind-bending.

Regression of behaviors is real and scary right now. There are hints some of the experiences that occurred in the chapter titled “Waves of Fury” in my book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism. Lack of understanding what is going on=frustration leading to more meltdowns since March. The only difference is that we know how to sense the buildup and cut things off at the pass or re-direct him before the behaviors escalate. I fear for both our family and others in the same boat who have a child with special needs and no school or day programs now or for the foreseeable future. So all I can do is take it day by day…. sometimes hour by hour… and breathe.

Here is a link to an article I wrote about this experience: 

@ https://themighty.com/2020/05/supporting-person-down-syndrome-autism-covid-19/? tm_source=engagement_bar&utm_medium=link&utm_campaign=story_page.engagement_bar/

Not everything is doom and gloom this summer. My book A New Course is being well received with 49 five star Amazon reviews, order a copy @ https://amzn.to/2W3Un6X My goal is 59+ to commemorate my upcoming birthday. Amazon and Goodreads reviews are critical to help move a book up in rankings and reach more readers. If you have read A New Course, the best gift you could give me for my 59th birthday is a review!

Here is a stellar testimonial I just received from the author of the gold standard book “When Down Syndrome and Autism Intersect:

“Teresa Unnerstall’s book, A New Course: A Mother’s Journey Navigating Down Syndrome and Autism, captured my heart as she relays her family’s journey which mirrored my own in so many ways. Teresa poignantly shares the challenges and joys that come with parenting a child with DS-ASD. Her book is a true treasure that offers hope, acceptance, and kinship to other like-families and to those who love, support and care for them”.

—Margaret M. Froehlke RN, BSN Author of When Down Syndrome and Autism Intersect, A Guide for Parents Guide for Parents and Professionals

A New Course Book Cover multiple books

Click here to order your copy of my book: @ https://amzn.to/2W3Un6X

We are on summer vacation break and today is my son Hank’s 28th birthday! You can keep up with Nick’s world and our birthday celebrations on social media! I am posting a bunch of fun pictures. Media sites are listed below with direct access and on my website @ https://teresaunnerstall.com/  Keep your eye open for some fun giveaways including copies of my book to celebrate my birthday. Thank you for following and supporting Nick’s world and my new book. Take care, be well find ways to enjoy your summer and the beauty in each day.

That’s what is in my noggin this week 🙂

~Teresa

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