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 🙂

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Follow Nick:

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

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

Twitter: https://twitter.com/tjunnerstall

 

Posted in Down syndrome, Down Syndrome Awareness

We Rocked the Socks!

We Rocked the Socks!

rock your socks

Just three weeks ago, I started a campaign centered around World Down Syndrome Day to raise awareness and funds for The National Association for Down Syndrome (NADS), which is our local support group here in Chicago.  I was approached by We Help Two, which sells these funky socks online.  With each pack purchased, We Help Two donates 60% to NADS.  On top of this, We Help Two also donates a pair of thermal socks which Nick and I will be taking to our local homeless shelter.  My son Nick is 23 years old, he has Down syndrome and autism.

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We have exciting news to share.  After just three weeks in this campaign, we raised $513.00 for The National Association for Down Syndrome!  In addition, 57 people will receive warm socks at our local homeless shelter. 🙂 🙂 🙂

Look who’s rocking the socks……

Nick with his respite workers 🙂

nick jodi kelsey socks

Me rocking the socks……

Me funky socks

Nick’s Aunt and Uncle in Texas 🙂

scott and laura socks

Nick’s Dad with Hormel Food Service group…

Hormel funky socks

My fitness class buddies 🙂

studio one socks

Nick’s respite caregiver, Miss R rocking the socks….

Miss R socks

Nick’s brother and his girlfriend….

hank socks

There’s still a few days left if you would like to order your 3 pack of funky socks, for $15 plus S&H click here:

Order Funky Socks:  https://my.wehelptwo.com/campaign?reset=1&id=373

A special thanks to We Help Two for a WONDERFUL campaign. It was super easy to set online, and the socks are shipped and at your door in two days!  I highly recommend this company.  We Help Two partners with schools, organizations, individuals and non-profits to make twice the difference.  They are truly making a difference by raising funds for organizations, and giving back to the community, with thermal sock donations to local homeless shelters.  What an impact they make, by helping two ways!

wehelptwo

For more information about We Help Two follow on Facebook and click here https:// www.wehelptwo.com

I want to thank everyone for being a part of this campaign, rocking those socks and supporting Down syndrome awareness by purchasing socks and promoting World Down Syndrome Day on social media. Stay tuned for a future blog, when Nick and I take the thermal socks to our local homeless shelter.

That’s what is in my noggin this week!

~Teresa 🙂

Follow Nick:

Down Syndrome With A Slice of Autism on Facebook and Pinterest

#nickdsautism on Instagram

@tjunnerstall on Twitter

 

 

 

 

 

 

 

 

 

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

World Down Syndrome Day~ Rock Your Socks

funky-socks

World Down Syndrome Day~ Rock Your Socks

Mark your calendars for 3/21/17, that’s World Down Syndrome Day!

“World Down Syndrome Day is observed on March 21. On this day, people with Down syndrome and those who live and work with them throughout the world organize and participate in activities and events to raise public awareness and create a single global voice for advocating for the rights, inclusion and well-being of people with Down syndrome.”

world-down-syndrome-day

One of the trademarks of World Down Syndrome Day, is rocking your socks!  This year I have a partnership with We Help Two, to advocate,  raise money and awareness for Down syndrome.  It’s easy and fun way to help out by ordering some cool, funky socks. We Help Two, sent me sample packages of these socks.  They are really bright, fun and well made.

You can purchase these socks at $15.oo per 3-pack, and it will be mailed to you, using 2-day shipping.  A large portion of the proceeds from this campaign will go directly to the National Association for Syndrome, (NADS) http://www.nads.org.

nads-logo

AND ON TOP OF THAT for every pack of funky socks sold, We Help Two will give a pair of warm, thermal socks to donate to our local homeless shelter.

warm-sock-photo

Help Nick and I knock the socks off World Down Syndrome Day by raising awareness, along with buying and wearing some funky socks.  You’ll be supporting NADS and helping the homeless.  That’s a win win for everyone!

To ORDER your FUNKY SOCKS click here:  

https://my.wehelptwo.com/campaign?reset=1&id=373

Hurry and order yours today so you can rock your socks on 3/21 WDSD!  Thank you in advance for helping us, and spreading the word that Down syndrome rocks. That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

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Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

Posted in Augmentative and Alternative Communication (AAC), Autism, Behavior/ ABA, Dual Diagnosis Down syndrome and autism, Uncategorized

Blog #155~More Than Just Down Syndrome,DS-ASD

Blog #155~More Than Just Down Syndrome, DS-ASD

My son, Nick has Down syndrome. There came a point when I felt like we didn’t fit in with the Down syndrome support groups. We stopped going to the local support group holiday parties, play groups and other fundraising events. My son, Nick lacked speech and displayed unusual and repetitive behaviors.  These stimming behaviors included tapping, shaking and throwing objects.  Vocal stimming and yelling was another behavior that he exhibited.  His speech delays resulted in frustration on his part, which led to behavior problems and violent meltdowns.  It became apparent that this was more than just Down syndrome, when he hit puberty.

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We approached the elementary school IEP team about these outbursts, where he would throw things, trash the classroom along with pinching and scratching staff.  It didn’t seem like any of us, could get a handle these problems both at school and in our home.  The school was reluctant about getting an autism evaluation done, as they stated; “We have a primary diagnosis of Down syndrome we can work from”.  Rather than push the matter with the school, we chose to have an independent evaluation done and paid for it (with some help from our private insurance), out-of-pocket.

It was money well spent. Nick got the diagnosis of Down syndrome and autism (DS-ASD).  If you suspect that your child’s behaviors are more than just Down syndrome, I would strongly suggest getting a medical evaluation done by a clinician.

The diagnosis of autism, was like getting the magic key, that unlocked the door to more services for our son...….

magic key

Here are the additional services we received with the secondary diagnosis of autism for our son Nick who also has Down syndrome.  Obtaining these services took some time, and didn’t happen all at once.  But the effort to get them, has been well worth it. These services were provided in part, by the school district and outside agencies:

*Behavior intervention by the school district,  BCBA certified autism specialist resulting in a Functional Behavior Assessment (FBA).  This lead to the development of a behavior plan, specifically targeting all triggers, and how to prevent & handle crisis situations during meltdowns.

*Speech support and training on how to implement a Picture Exchange System (PECS), along with an Alternative Augmentative Communication (AAC) device.

ipad touch chat.JPG         photo (123)

*Toilet Training and workshops for home support  This included coaching on how to develop and implement a timed toileting schedule and visual supports to promote independent living skills inside the home.

*Additional State Funding (In-Home Family Support Child Based Waiver)  This funds respite care, behavior support and safety/ health equipment to support the child at home.

*Federal Funding (Supplemental Security Income-SSI)  A federal  income supplement program funded by general tax revenues (not Social Security taxes): It is designed to help aged, blind, and disabled people, who have little or no income; and: It provides cash to meet basic needs for food, clothing, and shelter.

The formal, dual diagnosis of Down syndrome and autism (DS/ASD), helped school staff, therapists, medical professionals, family and friends get a better understanding of Nick’s behaviors.  By getting access to these additional supports, we’ve been able to change the strategies needed to help Nick navigate his world.  His communication improved, allowing him to feel understood, respected and less frustrated.  As a family, we felt better assisted with the autism training and having funding for respite staff that takes some of the burden off us.

If you suspect your child with Down syndrome may have autism, read this link by the National Down Syndrome Society for the signs and symptoms: @https://www.ndss.org/resources/dual-diagnosis-syndrome-autism/

Additional resources for navigating a dual diagnosis of Down syndrome and autism:

*When Down Syndrome and Autism Intersect-A Guide to DS/ASD for Parents and Professionals and Supporting Positive Behavior in Children and Teens with Down Syndrome books:

down-syndrome-and-autism-intersect

Book Supporting Positive Behavior DS

*The Kennedy Krieger Institute- https://www.kennedykrieger.org

*Down Syndrome Association (UK)- http://www.downs-syndrome.org.uk/for-families-and-careres/dual-diagnosis/

*National Association for Down Syndrome (NADS)http://www.nads.org/resources/down-syndrome-and-autism/

*Facebook Support Groups:

-Down Syndrome With A Slice Of Autism

-Autism Discussion Page (Bill Nason)

-Down Syndrome and Autism (there are several of these groups, all very supportive and openly honest)

The challenges of having a child with Down syndrome and autism are unique.  So many parents say that they no longer fit in with the Down syndrome support groups and can’t relate to the autism groups either; they feel isolated.  You as the parent, know your child best.  If you suspect that your child has more than just Down syndrome, take action to get a clinical, medical evaluation and find the additional support to help your child.

That’s what is in my noggin this week 🙂

~Teresa

Follow Nick:

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

Twitter @tjunnerstall