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
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.
Blog #242~Gift Ideas that Support Individuals with Down syndrome and other Disabilities
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.)
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/
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/
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
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/
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
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. SeaneseShirts: 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.
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!
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.
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.
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.
Blog #240~October is Down Syndrome Awareness Month
October is Down Syndrome Awareness Month. My son, Nick is 27 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.
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 Autism. Here 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
🙂 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/
🙂 Your 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.
🙂 Encourage your kids to volunteer for Special Olympics and Best Buddies programs through their school.
🙂 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.”
🙂 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 donate a copy to your local library @ https://amzn.to/2W3Un6X
Thank you for supporting and sharing all about Down syndrome awareness this month! That’s what is in my noggin this week.
Follow us on Social Media:
Facebook and Pinterest @Down Syndrome With A Slice Of Autism
Blog #239~Back to School Tips for DS-ASD Families in 2021
As the 2021-2022 School year approaches after a lengthy Covid-19 lockdown, many families feel anxiety about returning to school. Families who have a child with a dual diagnosis of Down syndrome and autism (DS-ASD) have additional challenges and needs to consider.
My name is Teresa Unnerstall, I am a DS-ASD parent, consultant and author of A New Course: A Mother’s Journey Navigating Down Syndrome and Autism. My son Nick is 27 years old and my passion is to help families, educators, therapists, medical professionals and anyone interested in supporting individuals with co-occurring DS-ASD.
This week, I want to offer some practical tips to help families ease back to school. Whether you are in person or remote, the goal should be a smooth transition for students.
Here are my 10 Back to School Tips:
1. Prepare the student with a visual countdown calendar, and re-instate morning/evening routines before school starts.
2. Tour the school with your child. Then, create a social story or video social story of the school settings and staff that the student will be interacting with. Review this several times before school starts.
3. At the tour, whether it’s in person or virtual, ask the teacher to show you the Covid-19 safety precautions, accommodations and equipment that is listed in the IEP to make sure everything is in place.
4. Prepare a student “About Me” profile sheet. There are many templates available online. You can include different sections such as, Things I love, My Strengths, What Works Best for Me, How to best support me, What Doesn’t Work for Me, and Interests. Make several copies to share with the staff.
5. Determine the modes of communication back and forth with the teacher and school staff. Examples include texting, email, communication logs/notebooks and daily report sheets. This is very important as many students with DS-ASD who have language deficits or may be non-verbal.
6. Review the child’s IEP to insure that all goals and accommodations are still relevant. Note any additional needs or concerns you have coming off of the summer break and remote learning. Share these with the staff at school.
7. If the student has a behavior support plan, check to see if this has been shared with all staff and is ready to put in place on day one. Make a list of any new target behaviors that may need to be addressed.
8. If the student uses AAC (Augmentative and Alternative Communication) make sure the teacher and aides are familiar with how to use the program, whether it’s high tech or low tech like a picture exchange system (PECS). You can request a training for staff and parents on how to program devices, navigate tabs and get trained on how to utilize PECS with the school speech and language therapist or school district AAC specialists.
9. Students may have lost skills or experienced regression due to summer break and remote learning due to the Covid-19 Pandemic. Evidenced-based practices help students regain lost skills and develop new ones. Some examples are using visuals, schedules, task strips, task analysis, first-then prompts, visual timers, choice boards and sensory breaks.
10. Show your commitment by staying on top of your child’s progress. Ask for data within the first quarter. Data drives decision making for future conferences and IEP meetings. If possible, volunteer at school, (room parent, field trip chaperone, art awareness presenter, book fairs, picture day and assisting with making learning materials like laminating and making copies).
Being prepared, invested and aware of your child’s needs will help them reach their full potential for the new school year. As students re-enter school after a long break, let’s also remember to extend each other some grace, be flexible, and give time and space to establish the new normal, whether you are heading back into the classroom or working remotely.
Blog #238~Autism: Welcome to My Life… Sleep Number is Zero
Autism Acceptance and Awareness Month is winding down, but for countless families living with autism it will continue beyond April, and often includes a sleep number of zero. That is the opening chapter of the book, Welcome to My Life: A Personal Parenting Journey Through Autism by author Laurie Hellman. My son Nick, is 27 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). I am quite familiar with sleepless nights followed by the fog and exhaustion that comes with autism. But this book is much more than sleepless nights. The author takes you through a journey that is a honest portrayal of what autism is like, often raw but always filled with compassion and love.
What I find refreshing about the book, Welcome to My Life, is that it depicts many of the aspects that families deal with when autism is profound. Author Laurie Hellman, pulls back the curtain and lets you in to see the dents in the walls, the internal, detailed pre-planning before any event outside the home and yes…..the literal shit show, because trust me it happens. I found myself nodding my head, getting teary eyed and laughing, as her stories were so relatable. Laurie’s love and determination for her son mirrors mine. Finally, there are many lessons that Laurie offers in her book:
“Skyler teaches me to be brave, strong and courageous. he’s taught me that when I am tired and feel like giving up, I can keep going.” Laurie Hellman
It was heart wrenching to read about the additional health struggles associated with Laurie’s son, Skyler. I admire how she poured over research and turned over every stone to find answers and treatment to help him. As a mother of a child with autism, I understood the feelings of grief over what might have been. In my book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism-(https://amzn.to/2W3Un6X) I wrote about all the milestones that my son missed out on, like getting his driver’s license, going to the prom and eventually heading off to college. Did you know parent’s of individuals with autism sometimes find it easier to smile and say everything is fine? Why? Because quite frankly on some days it’s just too much to unpack. When autistic kids can’t process overstimulation it can lead to meltdowns, and as a parent you are right in the path of any collateral damage. Laurie writes about how her son can’t verbally communicate so he may lash out by swatting her arm or smacking her leg…..
“On most days, I think to myself, Does he even like me?” Laurie Hellman
After 27 years of navigating DS-ASD with my son, I have learned the function of such behaviors. I cope, by putting them in the compartment of brain rewired differently with autism. I don’t take it personally, when Nick hits me anymore, because he is mostly non-verbal. I recognize that these behaviors are his means to communicate when he feels overwhelmed and not being heard.
I think that what you will learn from reading books about autism like ours, is that if you met one person with autism…. you met one person with autism. Each is a unique journey, because autism is a spectrum disorder. Autism Acceptance and Awareness Month is about understanding these journeys and different perspectives. With better understanding our society can be more kind, patient and compassionate:
“Simple acts of kindness go such a long way and can restore my sometimes-crumbling faith in humanity.” Laurie Hellman
Moving beyond Autism Acceptance and Awareness Month, I encourage you to continue to learn more about autism. Share our stories so we can make this a bigger narrative. That sleep number of zero is real, along with the challenges associated, especially when autism is profound. Understanding leads to acceptance. It means showing kindness by making some room at the table for all abilities and behaviors of autistic individuals along with their families.
Blog #236~Need IEP Help? The New Go-To Guide: Special Education Savvy
IEP Season is here, do you need help understanding the process and how to become a better advocate for your child? I’ve got the resource for you, just in time for IEP season. It is the new go-to guide, Special Education Savvy: A Mom’s Guide to Mindset and Effective Advocacy Throughout the IEP Journey and it’s a must read! I received an advanced reader copy of Mary Beth Gilliland, M.ED book which was just released last week. The author literally takes you the reader, by the hand and guides you step by step on the IEP process.
IEP stands for Individual Education Plan, which is a written document outlining the program of special education instruction, supports and services that a student with a disability needs to make progress in school. IEP’s can be complicated and daunting, especially for moms who are new to navigating this journey with their child. I was one of those moms, my son Nick, has co-occurring Down syndrome and autism (DS-ASD). This new book, Special Education Savvyis the book that I wish I had in my hands 27 years ago.
Special Education Savvy stands out in my mind as different than other special education/ IEP/advocacy books for several reasons. First of all, the author Mary Beth Gilliland feels like a mentor that is sitting right there with you at an IEP meeting. She provides sections that include basic special education 101, advocacy strategies, IEP meeting tips and more. You will also learn how to handle the uncomfortable and often challenging encounters that parents may face when IEP’s, when aren’t being followed or their child is not making progress. Second, this book is easy to read especially for busy moms who are juggling a multitude of responsibilities. The technical jargon associated with special education is clearly spelled out making it easier to understand. Mary Beth also breaks down every aspect of the IEP process, so you don’t feel overwhelmed. Finally, as the title suggests you come out of each chapter feeling confident with a savvy mindset ready to advocate for your child.
I found myself shaking my head, yes as I read each chapter. Mary Beth uses clever analogies to make important points about a student’s rights along the technical stuff like IDEA (Individuals with Disabilities Education Act) and FAPE (Free and appropriate public education). Again, she clearly explains these tough areas and makes the information parent friendly.
As a DS-ASD consultant, advocate and author of A New Course: A Mother’s Journey Navigating Down Syndrome and Autism (available at https://amzn.to/2W3Un6X ) I highly recommend Special Education Savvy. It is the ultimate instruction manual for understanding and advocating for your child’s IEP. You will feel more educated and empowered with this well written toolbox of strategies. Ultimately, this knowledge will help to ensure your child receives the services and support to be successful in school.
That’s what is in my noggin this week. Now, I am off to find a cute pair of yellow flats and get savvy for April to advocate about Autism Awareness Month.
Follow us on social media on Facebook and Instagram @ Down Syndrome with a Slice of Autism and on Twitter @tjunnerstall.
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
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!
Blog #235~More than Down syndrome, Co-occurring DS-ASD
As a DS-ASD consultant and author of A New Course: A Mother’s Journey Navigating Down Syndrome and Autism, I am often asked why it is important to seek a secondary evaluation for autism for individuals with Down syndrome. My son, Nick is 26 years old and has co-occurring Down syndrome and autism (DS-ASD). The needs associated with DS-ASD are complex and there are several areas where you can support a child at their level.
Click on the blog link below to read more about co-occurring DS-ASD and how you and the IEP team can better support the additional needs associated with a dual diagnosis of Down syndrome and autism:
There are many more services, supports and resources available for individuals with co-occurring Down syndrome and autism (DS-ASD). My mission is to help families navigate this journey easier, raise awareness, understanding and provide guidance in this journey navigating DS-ASD.
That’s what is in my noggin this week.
Follow on Social Media
Facebook, Instagram and Pinterest at Down Syndrome With A Slice Of Autism
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.
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.
*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.”
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.
Follow us on Social Media:
Facebook and Pinterest @Down Syndrome With A Slice Of Autism