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

Blog #244~ Kicking off Autism Awareness Month with Forever Boy

Blog #244~ Kicking off Autism Awareness Month with Forever Boy

April is Autism Awareness-Acceptance Month. I want to kick it off with the book release of Forever Boy by Kate Swenson, creator of Finding Cooper’s Voice.

Available on Amazon https://amzn.to/3K8nw8N , Barnes and Nobles, Target and more

Forever Boy is a memoir of Kate Swenson’s journey as the mother of Cooper, who was diagnosed with severe, non-verbal autism. There were many resonating stories in her book I related to and wrote candidly about in my book, A New Course: A Mother’s Journey Navigating Down Syndrome and Autism (https://amzn.to/2W3Un6X). My son Nick is 28 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). It’s very hard to open up about some aspects of life with autism, I applaud Kate for her honesty and beautiful writing style.

There have been many obstacles to overcome in order to support my son Nick. Autism is a spectrum disorder and when your child is profoundly disabled, the barriers can be many. Imagine not being able to speak verbally and how frustrating it would be. Communication and behavior go hand in hand. Every behavior is communicating an unmet need or struggle. As a parent, it is heartbreaking to see your child struggle. Forever Boy takes you through the pain and joy that Kate and her family experienced in a humble and a heartfelt way.

So, let talk about the hard. Supporting a child with severe, non-verbal autism includes advocating for services, support, providing appropriate education and finding a way to give your child a voice. As I mentioned earlier, every behavior, including the maladaptive behaviors are communicating an unmet need or struggle. Individuals with autism can also have difficulties self-regulating. When a situation becomes overwhelming, and reaches a boiling point, the end result can be a meltdown. This is the hard. In Forever Boy, I felt the sweat, fear and bruises that often follow a meltdown. But what is much worse, is the feeling that your child is struggling in a world that doesn’t often understand them.

“Speak your truth. Even if you voice shakes. Share your life.” ~Kate Swenson, Finding Cooper’s Voice

Another “pain point” that families on the severe side of autism experience is isolation. It might be fear for your child’s safety due to elopement or worry that certain social settings might be too overwhelming. Sometimes, it’s just easier to stay home or do shorter visits to prevent stimulus overload and having stress chemicals build up, which can result in a meltdown. (To understand this better, I highly recommend following The Autism Discussion Page, on Facebook. Bill Nason provides a wealth of information about autism that is very easy to understand for parents. He also has user friendly guides available for purchase.)

The book Forever Boy opens the curtains to what severe, non-verbal autism looks like from a mother’s perspective. You will feel the love and joy as well as the struggles and heartbreak. This book will educate, inspire and empower parents, teachers, professionals and anyone interested in learning more about how to support individuals and their families. Thankyou Kate for being vulnerable and sharing your journey. Thank you for showing the beauty of Cooper, his unique abilities and giving hope to others. Many families on this journey will benefit from knowing that they are not alone.

“Once you make it through, help another parent. Text them. Call them or go to them. Sit with them in the dark. Be the person you needed in the beginning.” ~Kate Swenson

My goal is to help others and make this path of DS-ASD easier and more understandable. I look forward to sharing more about supporting individuals and their families this month. That’s what is in my noggin this week.

~Teresa 🙂

Follow us on social media, links in the website above
Posted in Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism

Blog #243~ World Down Syndrome Day, 3/21

Blog #243~World Down Syndrome Day, 3/21

March 21st is World Down Syndrome Day, 3/21. My son, Nick has Trisomy 21 which means there are 3 copies of chromosome number 21. The theme for 2022 is “Inclusion Means”. People with Down syndrome still fight barriers that keep them from being fully included in their community and society across the globe. Meaningful and gainful employment opportunities are difficult to come by. Parents and individuals with Down syndrome continue to advocate to have opportunities to be included in a world where everyone belongs.

Understanding Down syndrome is the first step to help individuals to feel accepted and included. Sharing our stories and posts on social media is another great way to shift the narrative of what people perceive about individuals with Down syndrome. I encourage you to get to know the person with Down syndrome instead of just knowing about Down syndrome.

This month on my social media sites, I have done 21 posts so you can get to know my son Nick better. He is 28 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). Follow us on Facebook and Instagram at Down Syndrome with a Slice of Autism. Use some of the hashtags shown at the bottom of this post when sharing posts on social media. Learn about our journey in my book, A New Course: A Mother’s Journey Navigating Down Syndrome and Autism

Order your copy here: https://amzn.to/2W3Un6X
and ask your library to carry it!

Thank you for your support and help promoting World Down Syndrome Day and following our journey. That’s what is in my noggin this week.

~Teresa 🙂

Posted in Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #242~ Gift Ideas that Support Individuals with Down syndrome and other Disabilities

Blog #242~Gift Ideas that Support Individuals with Down syndrome and other Disabilities

This image has an empty alt attribute; its file name is rs=h:500,cg:true
https://specialsparkle.com/

Are you looking for unique gifts that help to support young adults with Down syndrome and other disabilities? This week, I have assembled a list of 7 small businesses that offer some awesome merchandise. I have personally bought products from each of these businesses. You can find out more below and follow them on Facebook and Instagram.

My name is Teresa Unnerstall and I am a parent to a 27 year old son with a dual diagnosis of Down syndrome and autism (DS-ASD) and the author of A New Course: A Mother’s Journey Navigating Down Syndrome and Autism. My book is available on Amazon, click below to order a copy for Christmas. (For more book recommendations click over to the resource page on this blog site.)

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

7 Small Businesses that Support Individuals with Down syndrome and Other Disabilities:

1.Special Sparkle: Kelly is a young lady with Down syndrome and this company was created to assist Kelly in leading a fulfilled and productive life after school came to an end for her.  She loves fashion, style and bling. Check out her jewelry line here: https://specialsparkle.com/

Meet Kelly — The One of a Million Project
https://specialsparkle.com/

2. 21 Pineapples Shirt Company: Nate Simon has always been known as a fashion icon. The company’s mission is to change the way others perceive people with Down Syndrome & other special abilities one Hawaiian Shirt at a time. A percentage of all sales will go directly to support Down Syndrome organizations throughout the world. Check out his merch at https://21pineapples.com/

Mom-And-Son Duo From Beverly Use New Hawaiian T-Shirt Business To Advocate  For People With Down Syndrome
https://www.21pineapples.com

3. Candidly Kind: Grace Key started candidly kind to spread light love and acceptance thru her original art and life. Candidly Kind gives a percentage of every sale to charities who share the candidly kind vision to spread light, love and acceptance. It is a huge part of Grace’s mission…giving back. Check out her line at: https://www.candidlykind.com

https://www.candidlykind.com

4. Margrit Co Jewelry: Margrít Co. is a designer jewelry brand that focuses on creating unique, colorful and lightweight jewelry for women of all ages. Margrit Co. gives 15% of all retail sales to our Down with Business scholarship fund, which benefits ministries and businesses owned and operated by individuals with Down Syndrome. Owner and Designer Maggie Blair’s youngest brother Matthew is 18 years old and has Down Syndrome and works alongside her as the shipping manager. Check out her beautiful jewelry collection here: https://margritco.com/

Meet Maggie Blair Dietrick of Margrit Co. in Waco - Voyage Dallas Magazine  | Dallas City Guide
https://margritco.com

5. River Bend Gallery showcases the photography by Geoffrey Mikol and is located in downtown Galena, Illinois. His work is mainly of nature and landscapes. Check out his beautiful photography gifts here https://www.riverbendgalleries.com

https://www.riverbendgalleries.com

6. Bitty and Beau’s Coffee: With over 80% of people with intellectual and developmental disabilities unemployed nationwide, the Wrights believe that Bitty & Beau’s Coffee creates a path for people with disabilities to become more valued, accepted and included in every community. Check out their merchandise here:

7. Seanese Shirts: Is owned by “Born This Way” star, Sean McElwee. The name of the company came from what Sean’s family called his speech as a child. Now, his funny phrases are being immortalized on swag. Each shirt features a phrase and graphic design, and all designs are approved by Sean. Each month, 10 percent of profits go to a disability non-profit.

You can find a wide variety of t-shirts on Sean’s website at https://seanese.com

Cyber Monday Buy any Two items... - Sean from Born This Way
https://seanese.com

Nick and I would like to wish each of you a Happy Holiday. Thank you for supporting our work to educate, inspire and advocate for individuals with a dual diagnosis of DS-ASD and other disabilities. We look forward to sharing more with you in 2022. Follow us on Facebook and Instagram at Down Syndrome with a Slice of Autism!

That’s what is in my noggin this week.

~Teresa 🙂

Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #241~ DS-ASD in Praise of Caregivers

Blog #241~DS-ASD In Praise of Caregivers

November is National Family Caregivers Month, it is a time to recognize and honor caregivers across the country. Did you know that there are over 65 million Americans caring for aging and disabled loved ones in the US? My son, Nick has a dual diagnosis of Down syndrome and autism (DS-ASD). We are very fortunate to have wonderful caregivers to support him. This allows us to work, get out and enjoy activities outside the home.

The needs of individuals with DS-ASD are complex and behaviors can be challenging. It can easily burn out family members trying to manage it all alone. Families can access funding for respite care by checking to see if their state has a Medicaid waiver or other programs for individuals with a disability.

For more information click here:

https://www.medicaid.gov/medicaid/home-community-based-services/home-community-based-services-authorities/home-community-based-services-1915c/index.html

https://www.medicaid.gov/medicaid/section-1115-demo/demonstration-and-waiver-list/index.html

I want to honor the amazing caregivers who work with our son, Nick. He enjoys their company at home and out in the community. The Medicaid home and community based service plan here in Illinois pays personal support workers who also work on goals for Nick to keep up with his skills and communication.

Nick and Miss R.
Nick and Miss R. at the pumpkin patch
Nick with Jodi and Kelsey
Nick is a bit smitten with Kelsey
Nick and Lisa

As I mentioned earlier, Nick enjoys their company. On many occasions he will grab pictures of the caregivers out of his Picture Exchange Communication System (PECS) book and hand them to me. A PECS book helps Nick to communicate his wants, needs and feelings. Individuals with DS-ASD can benefit from using pictures to express themselves. It is very evident that Nick loves each of them and they have all become part of our family.

Thank you to Miss R., Jodi, Kelsey and Lisa for your love and support. We praise all that you do for Nick and our family. We honor you this month and every day of the year! That’s what is in my noggin this week.

~Teresa 🙂

For more information and link to my book: https://amzn.to/2W3Un6X

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 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

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, Fun Side of Nick, Recreation/Leisure and Special Needs

DS-ASD Winter Update

DS-ASD Winter Update

Vail view 2019

My son Nick is a young adult, who has a dual diagnosis of Down syndrome and autism (DS-ASD). He attends an adult developmental day training program which provides a variety of structured activities. This week, I want to catch everyone up on what Nick’s been doing this winter.

Nick’s day program includes learning and enrichment activities. Clients enjoy learning new skills, vocational jobs, exercise, crafts, shopping, cooking, theme days/parties and community outings. The structured program is a necessity for individuals like Nick who have a secondary diagnosis of autism. He looks forward to going to this program daily.

Nick at his adult developmental day training program:

Nick bowling fall 2019     nick connect game

There have been many celebrations and fun excursions this winter for Nick. Here are a few of the highlights:

Christmas in Chicago was unseasonably warm this year, no jacket or shoes required. 🙂

Nick Christmas presents 2019     Nick Christmas outside 2019

We recently enjoyed a nice vacation in Vail. Nick loved the dog sledding with Mountain Mushers. He got to ride with his guide and friend, Cameron for the third year in a row. This year Nick road up the gondola for the first time and we did snow tubing. It’s always nice to go into Vail village, and this year his respite worker joined us in the fun and helped support Nick for a few days of our trip.

Vail vacation highlights:

Nick and Cameron Dog Sledding 2019   Dog Sledding 2019 Nick and Miss R Vail 2019   Nick and Dad Tubing 2019

Nick just celebrated his 26th birthday! He had a pizza party with cupcakes at his day program. We also had cake at home and a nice birthday lunch with family.

Nick’s birthday highlights:

Nick birthday at Keeler 2020   nick 26 birthday

nick birthday 2   Nick HBD

It’s been a fun and busy winter in Nick’s world. As most of you know, I have completed my memoir, “A New Course: A Mother’s Journey Navigating Down Syndrome and Autism”  which is forthcoming on May 5, 2020!  My next post will showcase the book and include pre-order details and how you can get your hands on a copy. I can’t wait to share this with all of you. I truly appreciate your support in my writing and following Nick’s world. 🙂

That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick’s world to view more photos and videos on social media:

Facebook and Pinterest @Down Syndrome With a Slice of Autism

Instagram @https://www.instagram.com/nickdsautism/

Twitter @https://twitter.com/tjunnerstall

LOGO TRANSPARENCY (5)

 

Posted in Behavior/ ABA, Down syndrome, Dual Diagnosis Down syndrome and autism

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

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

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

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

*The signs and symptoms of DS-ASD

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

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

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

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

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

magic key       down syndrome and autism intersect

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

~Teresa 🙂

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice of Autism

Instagram @nickdsautism

Twitter @tjunnerstall

 

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

World Autism Awareness Day-April 2nd

World Autism Awareness Day-April 2nd

Autism Awareness Day

April 2nd is World Autism Awareness Day.  “Autism spectrum disorder (ASD) is a complex developmental disorder that affects a person’s ability to communicate and interact with others. More than 3.5 million Americans currently live with ASD, and 1 in 68 children are born with a variation of it.”  With this staggering statistic, it’s likely that you have encountered an individual on the autism spectrum.

Not just today, but the entire month of April is National Autism Awareness Month. During this month advocated seek to raise awareness,  understanding, acceptance, inclusion and self-determination for all individuals with ASD.

autism awareness 2016

One of the most famous and influential individuals with autism is Temple Grandin. “Temple Grandin is an American professor of animal science at Colorado State University, consultant to the livestock industry on animal behavior, and autism spokesperson. She is one of the first individuals on the autism spectrum to publicly share insights from her personal experience of autism. She invented the ‘hug box’ device to calm those on the autism spectrum.”

Temple Grandin quote 2“Based on personal experience, Grandin advocates early intervention to address autism and supportive teachers, who can direct fixations of the child with autism in fruitful directions. She has described her hypersensitivity to noise and other sensory stimuli. She claims she is a primarily visual thinker, and has said that words are her second language. Temple attributes her success as a humane livestock facility designer to her ability to recall detail, which is a characteristic of her visual memory. Grandin compares her memory to full-length movies in her head, that may be replayed at will, allowing her to notice small details. She also is able to view her memories using slightly different contexts by changing the positions of the lighting and shadows.  Her insight into the minds of cattle has taught her to value the changes in details to which animals are particularly sensitive and to use her visualization skills to design thoughtful and humane animal-handling equipment.”  (Wikipedia)

On April 2nd and throughout this month, advocates ask that you promote autism awareness and acceptance on social media, and encourage community support and understanding for individuals and families living with autism.

World Autism Awareness Day and National Autism Awareness Month is a great time to advocate for understanding, acceptance and inclusion, it’s essential to advocate for children, and adults, with autism year-round.

That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

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

Blog #192~Down syndrome-Autism: Green Monday Gift Ideas

Blog #192~Down syndrome-Autism:Green Monday Gift Ideas

green-monday

It’s green Monday and just two weeks until Christmas.  Here are some gift ideas for individuals having Down syndrome (or a dual diagnosis of Down syndrome and autism, or other special needs) along with their caregivers, teachers/aids, and therapists.

http://papercloudsapparel.com/  Order T-shirts, hats and totes designed by artists with special needs

My son Nick, wearing a Paper Clouds Apparel shirt designed by Justin Lundeen…

nick fire truck shirt

https://www.riverbendgalleries.com/  Features the beautiful photography of artist, Geoffrey Mikol prints, framed art, calendars, coaster sets and greeting cards are available for purchase online….

Geoffrey Mikol picture    Geoffrey Mikol

http://specialsparkle.com Kelly is a young entrepreneur who has Down syndrome.  She designs and makes fashionable jewelry you can order online….

special sparkle jewelry

http://www.christianroyalpottery.com/pages/about  Beautiful pottery (bowls, platters, plates, jewelry) by Christian Royal…..

 

 

One of the best gifts is an iPad and there are countless apps for learning and play.  If you are looking for a sturdy case, the Go Talk Rugged and Big Grip cases have held up the best…..  

 

If your child has sensory needs, and likes to do a lot of dropping, check out these toys:

vortx-dropping-coins  marble racemagic-tracks-mega-set-360-piece--A817AA38.zoom

Gifts ideas in located in the archives, type this in the search box: Blog #131~Christmas Ideas for a Child With Special Needs…..

 

Gift ideas for babies and toddlers with Down syndrome: http://www.cedarsstory.com/?s=Best+Gift+Ideas

Noah’s Dad- Down syndrome Awareness Top 10 gifts for a 7 year old: http://noahsdad.com/7-year-old-gift-ideas/

Books for caregivers and families, here are a few suggestions and there are more listed in this Blog #144~ Inspiring Books Related to Down syndrome located in the archives……

 

Gifts book cover    Book An Uncomplicated Life  down syndrome and autism intersect

Please feel free to share this, and any of my blogs with others and on social media.  Also, check out my Pinterest page for more gift recommendations and other helpful information. Do you have any gift suggestions? I’m always looking for unique gift ideas related to Down syndrome and autism to post on my website.  Nick and I wish you all the best as you are preparing to enjoy the holiday season.

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

~Teresa

Follow Nick on Social Media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall