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

Blog #248~Down Syndrome Awareness Month

Blog #248~Down Syndrome Awareness Month

October is Down Syndrome Awareness Month. My son, Nick is 28 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). As a parent, writer and advocate, my mission is 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 in all aspects of our society.

Click here to get the facts about Down syndrome: http://www.ndss.org/Down-Syndrome/What-Is-Down-Syndrome/

Here’s how YOU can promote Down syndrome awareness and acceptance:

🙂 Post information and stories about individuals with Down syndrome on your social media platforms. You can follow many inspiring individuals on Facebook and Instagram like Nick at #Down Syndrome with a Slice of AutismHere are a few of my favorites: #noahsdaddotcom #calebs_crew #brittanysbaskets #chrisnikic #dsdn #chucklesandmeatloaf #nothingdownaboutit #sean_from_born_this_way #troymadeit #abigail_the_advocate #theluckyfew #aceismyfriend #ndss #ndsc

🙂 Use and promote “person 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.”

🙂 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-You will get a custom hope kit to distribute to your OB/GYN and family doctor. More information https://hopestory.org/sign-up/

 🙂 Check with your local Down syndrome support group to see if they have promotional materials, like books and bookmarks that can be distributed at libraries and schools.

 🙂 Many 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/ .

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

  🙂 Here’s how you can help support families like ours, The Down Syndrome-Autism Connection is the gold standard organization supporting DS-ASD families @ http://www.ds-asd-connection.org/.  I am looking for 21 people to donate just $21 (or more) for the 3-2-1 Caring and Sharing fundraiser to directly help families navigating a dual diagnosis. The Connection provides valuable resources and support for families like ours in over 10 countries. Click here to donate: https://givebutter.com/E6h2IX/teresaunnerstall

A Lifeline for a lifetime

🙂 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. Please utilize the share buttons on social media and order your copy here: @ https://amzn.to/2W3Un6X 

This image has an empty alt attribute; its file name is a-new-course-book-cover-multiple-books.jpg
Order your copy today at https://amzn.to/2W3Un6X

Thank you for supporting and sharing information about Down syndrome awareness this month. Together we can promote understanding, acceptance and inclusion of all individuals with Down syndrome. That’s what is in my noggin this week.

~Teresa 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The Down Syndrome-Autism Connection Parent Panel at NDSC 2022

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

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

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

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

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

Teresa Unnerstall, author, speaker and advocate at NDSC presentation

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

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

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

~Teresa

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Posted in Adult Day Programs for Special Needs, Autism, Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #245~DS-ASD Update

Blog #245~DS-ASD Update

What does life look like now for Nick since the pandemic hit over 2 years ago? It’s very different, uncomplicated and often redundant. Sometimes it feels like the movie Ground Hog Day, with the same thing happening over and over. It’s not a sad life, it’s just a different life. My son is 28 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). This week, I want to paint a picture of what life is like for Nick and our family these days and how we make his days meaningful so he knows his value and worth.

For 10 years I wrote diligently and posted a blog each Monday. Then the pandemic hit and Nick’s adult developmental day training program shut down. Well over 2 years later, he still sits idle on their waiting list hoping to get back in. Part of the reason my blogs have been sporadic is due to taking care of Nick at home, while I continue to work. This is no easy feat when you are trying to tune out the many sounds of autism. Since my book, A New Course: A Mother’s Journey Navigating Down Syndrome and Autism, was published in May of 2020, many doors have opened up to presentations, workshops, webinars and podcasts. It has been very rewarding doing these projects and sharing strategies on how to navigate co-occurring Down syndrome and autism. Later this month I will be presenting in person at the National Down Syndrome Congress (NDSC) in New Orleans!

Order on Amazon at https://amzn.to/2W3Un6X

So, here’s a look at our new normal for the past two years. For most of us, this has been remote work, Zoom presentations and meetings which has been a great vehicle to reach a large audience across the country. Creating these presentations doesn’t feel like work, it’s exciting and creative. But, it can be difficult to concentrate when your son is constantly tapping, verbal stimming, pushing the microwave fan button, throwing things and running the water faucets. Nick also goes down some interesting YouTube rabbit holes. Lately he’s been diving down to find some real “gems”. This includes finding Thomas the Tank Engine the dark side, (picture Thomas with a black eye and goatee and guns blazing). Another gem has been fire alarm testing. Despite our efforts to clear the history on YouTube, he keeps finding those blaring alarms. It’s obviously fulfilling a sensory need he craves. Better on his iPad and not on a real fire alarm. 🙂

As I mentioned earlier, Nick’s day program has been a no go due to staffing shortages. It’s devasting to see that individuals with disabilities who are the most vulnerable, can’t get into day programs. Despite hefty signing bonuses being offered, many day programs continue to struggle with staffing. We have done our best to create some structure at home and provide him with personal support workers who assist him at home and with community activities outside the house. Structured teaching activities benefits include developing and maintaining educational and fine motor skills.

Structured Teaching Activities
Activities include matching, sorting office supplies and puzzles

Nick also has several jobs around the house which include unloading the dishwasher, recycling, vacuuming, and helping to prepare meals. These jobs along with the structured teaching activities are meaningful and bolster his confidence.

Nick unloading the dishwasher
Working at home

In addition to in home activities, Nick also enjoys going out into the community with his personal support workers. Having respite care is important for families, so each member gets a break and can go out and enjoy time on their own.

Fun at the Park
Lunch date with personal support worker

The new normal at home with Nick is working largely due to having wonderful personal support workers and offering meaningful activities. We have looked into other day programs, but most have waiting lists or lack the staffing to accommodate Nick’s needs. So, we just keep leaning into the new normal and doing the best we can to find balance in both our work and Nick’s needs. As a mom, it gives me comfort to hear him say “happy” and lean into life at home. Even if it does include those trips down the YouTube rabbit hole.

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

~Teresa

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

Blog #232~Online Links for Special Needs Parents

Blog #232~Online Links for Special Needs Parents

Support hands

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

Down syndrome support links:

Down syndrome awareness ribbon

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

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

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

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

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

https://hopestory.org Hope Story – Down Syndrome Diagnosis Support and Resources exists to give support, encouragement and hope to parents whose child have received a Down syndrome diagnosis; to provide free resources to the medical community to help them deliver a Down syndrome diagnosis, and to find ways for parents of children born with Down syndrome to use their unique story to bring hope to others.

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

Autism support links:

autism ribbon

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

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

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

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

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

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

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

More links for special needs parents:

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

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

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

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

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

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

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

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

Down syndrome and autism links:

DS-ASD Ribbon

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

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

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

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

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

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

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