Category: Dual Diagnosis Down syndrome and autism

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

DS-ASD: 10 Autism Holiday Stress Tips

Posted on by tjunnerstall

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

Posted on by tjunnerstall

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, IEP (Indivdualized Education Plan), Parenting Special Needs

Blog #232~Special Needs Parent and Educator Help During Covid-19

Posted on by tjunnerstall

Blog #232~Special Needs Parent and Educator Help During Covid-19

As a dual diagnosis DS-ASD writer and consultant, I’m scratching my head on how to help special needs families faced with the daunting task of implementing remote distance learning. This is an unprecedented time we are in facing with Covid-19. It’s like a continuous Ground Hog Day with no end in sight. My son Nick is 26 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). He normally attends an adult developmental training program. His program has been closed since March. The focus at home has been to work on independent living skills. So what advice can I offer? What would I do if my son was still in school?

My short answer is this………

“As an IEP team you have to collaborate together and think outside the box on how to navigate distance learning. That means asking for support, visuals, making addendums to the IEP, finding outside resources and therapies. Always lead with the child’s interests and strengths when implementing lessons and goals both at school and home.”

I am going to stay in my lane and introduce you to one of the top experts in navigating IEP’s. Catherine Whitcher’s podcast is packed with great advice on how parents and educators can work together to make education successful during the Covid-19 crisis. You won’t be disappointed and you will learn ALOT!!! 🙂 Click here to listen:

https://www.catherinewhitcher.com/blog/podcastcriticaliepdecisions

In this podcast, Catherine Whitcher explains that you can’t do an IEP meant to be implemented at school in the home. Here are a few key bullet points of her podcast:

*Keep track of what is being tried, what is working and not working.

*Collaborate together to come up with solutions, make adjustments and addendums to the IEP.

*Redefine what is appropriate for this current situation, then come up with a new plan.

You can follow Catherine on Facebook and Instagram where you will learn so much as I have over the years at https://www.catherinewhitcher.com/ She offers up to date, practical information in her blogs, podcasts and live feeds on social media.

Don’t wait for your child to get back into school to make up for lost time. Take action now to make the best out of distance learning by thinking outside the box, collaborating with the IEP team and working with your child’s strengths and interests. That’s what is in my noggin this week.

~Teresa 🙂

Follow on Social Media:

Facebook and Instagram at Down Syndrome with a Slice of Autism

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

Posted on by tjunnerstall

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

Posted on by tjunnerstall

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

 

 

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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

Posted on by tjunnerstall

DS-ASD Summer Updates

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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

Follow on Social Media:

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

Facebook Book Group @A New Course Book Launch

Twitter @tjunnerstall

 

 

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

Blog #229~The Mighty Article: Navigating the Covid-19 Lockdown With My Son Who Has Down Syndrome and Autism

Posted on by tjunnerstall

Blog #229~The Mighty Article: Navigating the Covid-19 Lockdown With My Son Who Has Down Syndrome and Autism

Here is an article that I wrote for The Mighty that was published last week about navigating the Covid-19 lockdown with my son Nick who is 26 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD):

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

Nick and Al Walking Covid-19

A silver lining in the Covid-19 lockdown, Nick and his Dad are taking long walks together when the weather prevails. I think a lot of families are doing this, how about yours? 🙂

Last Tuesday, my book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism launched and is available on Amazon https://amzn.to/2W3Un6X

A New Course Book Cover multiple books

It was a full day of virtual activities with some fun surprises. I will share more about the launch events on next week’s blog. A New Course is now ranked #25 in the ENTIRE Disability Parenting category and #2 in Hot New Releases in that category. 🙂  Let’s keep the momentum going. You can do so by leaving an Amazon review–That is the BEST way to help get this book out into the world.

Amazon Reviews

 

My mission is to help families, medical professionals, educators, DS support groups and every individual to truly understand this journey with my son– and to make things easier for everyone who is trying to help individuals navigate a dual diagnosis!

Thank you for all your support both in A New Course and this blog that has helped so many people learn more about DS-ASD.

That’s what is in my noggin this week!

~Teresa 🙂

Click on my website below for Social Media, book and blog information:

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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

Posted on by tjunnerstall

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, Self-care for special needs parents

Blog #228~DS-ASD: Parenting During the COVID-19 Crisis

Posted on by tjunnerstall

Blog #228~DS-ASD: Parenting During the COVID-19 Crisis

How’s everyone doing at home during this COVID-19 Crisis? The new normal of staying at home has it’s challenges, especially when you have a child with a dual diagnosis of Down syndrome and autism (DS-ASD). My son Nick is 26 years old and usually attends a daily adult developmental day training program. The structure and routine provides meaning to his life. But the Coronavirus has taken that away from him and all of us. So now what? I wish that I could wave a magic wand and show you how to navigate through this quarantine with your kids. I can only offer my perspective on parenting a child with DS-ASD this week. I’ll keep it short, because I suspect we are all overwhelmed.

Last week’s blog provided daily independent living skills ideas to work on at home with your child. Nick did great helping out and I posted daily videos of him in action on our social media sites. We will continue these living skills and also do some activity bins: Home School Activity Ideas: https://nickspecialneeds.com/tag/puzzle-and-mathcing-ideas-for-home/

I think it’s important to cut ourselves some slack right now. This is uncharted territory for all of us. 

Here are 5 things I am keeping in my noggin this week, to help navigate thru the COVID-19 Crisis:

*1-Remember to respond and not react when your child gets frustrated, bored and overwelmed. One of the lessons I offer in my book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism (click here to order https://amzn.to/2W3Un6X ) is the following: “Remain calm and matter of fact. You must be a constant in a sea of uncertainty”

*2-Do what you can and don’t beat yourself up. This isn’t the time to put pressure on yourself to play all the roles of a teacher, OT, PT, speech and behavior therapist. Take this opportunity to have fun with your kids and naturally build in learning and interaction around activities that they enjoy. We’ve been turning off Fox News and CNN and instead, snuggling under a blanket and watching old movies that Nick and his older brother Hank enjoyed growing up.

*3-Get some exercise! As a 35 year fitness professional I promise it will boost your immune system and elevate your mood. Go Noodle learning stations has some fun, free movement videos you can do with your kids: https://www.gonoodle.com

*4-I keep reminding myself that we are all in this together and that gives me comfort. It also helps me to tap into a memory that I’ve personally suffered through a lot worse. In August of 1983, Hurricane Alicia left us paralyzed and without electricity for 2 long, HOT weeks down in Houston, Texas. Oh, and thank goodness for humor and all the funny memes being shared on social media 🙂 

*5-What am I doing today to make things better for myself and others? 🙂

daily quarantine questions

So, these are the 5 things I am keeping in mind to navigate what appears to be a marathon of social isolation during the Coronavirus crisis. I wish each of you wellness and peace in your homes with your family and plenty of toilet paper for all. We can do this, we’re all in this together!

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

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

Blog #227~Daily living skills you can work on at home with your kids during the COVID-19 Crisis

Posted on by tjunnerstall

Blog #227~Daily living skills you can work on at home with your kids during the COVID-19 Crisis

So, your stuck at home with your kids during this COVID-19 crisis, now what? This is actually the perfect time to work on daily living skills with your kids. Why are these skills important to know?

Let’s go back to the purpose of the Individual Education Plan (IEP):   To promote further education, employment and independent living skills.

Often, in our busy lives it’s easier to skip over teaching daily living skills on a consistent basis with our kids. So now that time has slowed down, why not take a few of these skills and hone in on them? Not only will this help your child become more independent, it will also promote confidence, family teamwork and as a bonus– many skills provide sensory input. My son Nick is 26 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). Over the years we have built in many daily living skills into his routine at home.

Here are a few of the jobs that Nick does around the house and how they provide sensory input:

*Recycling (replacement behavior for throwing)
*Can crushing (sensory and motor activity and replacement behavior for throwing)
*Carry laundry basket and load washing machine (heavy work/ organizing)
*Put away groceries (organizing activity)
*Empty Dishwasher (organizing and sensory activity)
*Cleaning/ wiping down countertops and windows (organizing activity)
*Vacuuming (heavy work which is calming)

 

The following link below is a full list of daily living skills in the areas of self-care, personal hygiene, kitchen skills, home management skills, to name a few. Focus on one or two skills at a time. You can access visuals and task strips off of Google Images and videos on YouTube:

https://learningforapurpose.com/2019/09/01/the-best-functional-life-skill-resources-for-individuals-with-autism

This is a time of uncertainty and anxiety levels are running high for all of us. First of all breathe, our kids take cues from how we are reacting during this crisis. Next, cabin fever is a real thing, so try to enjoy each other and find ways to work together at home. This will benefit the whole family. Give you kids a sense of purpose and foster new skills to bolster their confidence. This will help them grow to become more independent. Be well and don’t forget to keep those iPads charged 🙂

My book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism is packed with more strategies and story about navigating a dual diagnosis of DS-ASD @https://amzn.to/2W3Un6X

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One last thing– World Down Syndrome Day is this Saturday 3/21– Here are 3 easy ways that you can help promote awareness, acceptance and inclusion: https://nickspecialneeds.com/2018/03/19/blog-200world-down-syndrome-day/

That’s what is in my noggin this week,

Teresa 🙂

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Follow Nick to see even more daily living skill activities and videos:

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

Twitter @tjunnerstall