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.
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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.
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Blog #230~ Book Review: Scoot Over and Make Some Room
My recent summer read– Scoot Over and Make Some Room: Creating a Space Where Everyone Belongs,by author and Instagram star, Heather Avis is a must read. She is the mother of 3 adopted children, two with Down’s syndrome and one of color. Here is one review from her book that speaks volumes:
“In a world of divisions and margins, those who act, look, and grow a little differently are all too often shoved aside. Scoot Over and Make Some Room is part inspiring narrative and part encouraging challenge for us all to listen and learn from those we’re prone to ignore.”
Each chapter in the book Scoot Over and Make Some Room extends the challenge to make room for not only individuals with Down syndrome but way beyond to all individuals with different abilities, ethnicities, race, viewpoints and perspectives. Heather’s book is filled with humorous stories, challenges and lessons she has learned raising her 3 children, navigating IEP’s, inclusion and acceptance. But this book dives down much further, by challenging the reader to look into their own lives and broaden your understanding and compassion towards people who may be different from you.
My son Nick is 26 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). In my book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism@ https://amzn.to/2W3Un6X there are many stories about times where I would brace myself in public. Countless times I would apologize for my son’s seemingly inappropriate behavior, and yes like Heather have a moment where the pants have gone down, 🙂
Heather tells about the “pants down in the park” episode that was highly inappropriate (and a one-time occurrence) with her daughter Macyn. I can attest to the need to be on high alert and cringing at times. Macyn is a very spirited and outgoing girl who likes to engage with strangers by waving and sometimes asking “WHATCHA NAME?” This happened once at a hip LA restaurant. This raises a good question: Is this behavior inappropriate or just different than the social norm? Why are we so fearful to interact with individuals who have an intellectual or developmental disability? Often it is fear of the unknown and being uncomfortable around someone who may speak or act differently.
Heather writes this powerful message in her book:
“We fear the unknown. And unfortunately, until we create space for people with physical and intellectual disabilities to show up exactly as they are and give them permission to interrupt our social norms, they will continue to be unknown and we will continue to be fearful,”–Heather Avis
What a profound message this is to society and lesson about acceptance. Personally, I feel that the world could use more kind interactions like saying “hi” and “WHATCHA NAME.” Obviously, we can all agree that “pants down in the park” is an inappropriate behavior. But as Heather writes in part:
“all of us have a responsibility to shift the way we react when faced with uncomfortable social situations. All of need to scoot over and make some room for people to respond in a way we’re not use to.”–Heather Avis
One of my favorite parts of this book is the chapter entitled “Make room for the Wildflowers.” Much of what we do in life is like a garden– planted in nice, neat rows. Take for instance inside school classrooms where the desks are all lined and in sync. Is there any space for the wildflowers to grow in these tidy rows? This metaphor opens up the dialog about inclusion and different abilities working alongside in the same classroom. Can we scoot over and make some room to let the wildflowers grow amongst the seamless rows and see the value of inclusion and all abilities? I can speak from experience that my son, Nick brought great value and taught lessons of patience, compassion and unconditional love to his peers while in the inclusion classroom setting. He continues to do so as a young adult with his interactions out in the community and at his adult developmental day training program.
There is so much more to this book and you will have to read it to find out for yourself. Scoot Over and Make Some Room is a call to action to shout the worth of people who are left out and misunderstood. Every parent, extended family member, physician, educator, pastor and others will gain a deeper understanding of how to do a better job to adjust, sit and listen in order to learn how to find a way to make room for everyone to be valued, accepted and included in our society.
That’s what is in my noggin this week.
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Heather Avis writes from the heart about all the things she wishes the every day person knew about inclusion. This book applies to teachers, parents, siblings and simply everyone who wants to change the way we see inclusion in the world around us.
Blog #229~The Mighty Article: Navigating the Covid-19 Lockdown With My Son Who Has Down Syndrome and Autism
Here is an article that I wrote for The Mighty that was published last week about navigating the Covid-19 lockdown with my son Nick who is 26 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD):
A silver lining in the Covid-19 lockdown, Nick and his Dad are taking long walks together when the weather prevails. I think a lot of families are doing this, how about yours? 🙂
Last Tuesday, my book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism launched and is available on Amazon https://amzn.to/2W3Un6X
It was a full day of virtual activities with some fun surprises. I will share more about the launch events on next week’s blog. A New Course is now ranked #25 in the ENTIRE Disability Parenting category and #2 in Hot New Releases in that category. 🙂 Let’s keep the momentum going. You can do so by leaving an Amazon review–That is the BEST way to help get this book out into the world.
My mission is to help families, medical professionals, educators, DS support groups and every individual to truly understand this journey with my son– and to make things easier for everyone who is trying to help individuals navigate a dual diagnosis!
Thank you for all your support both in A New Course and this blog that has helped so many people learn more about DS-ASD.
That’s what is in my noggin this week!
Click on my website below for Social Media, book and blog information:
Exclusive Author Interview- A New Course: A Mother’s Journey Navigating Down Syndrome and Autism
My book “A New Course: A Mother’s Journey Navigating Down Syndrome and Autism” will launch next week on May 5, 2020! Pre-order your copy now on Amazon— https://amzn.to/2W3Un6X My mission as an author and dual diagnosis consultant– is to make this journey smoother for families navigating a dual diagnosis of Down syndrome and autism (DS-ASD).
This week, an exclusive interview I did with Leslie Lindsay, the award-winning author of SPEAKING OF APRAXIA (Woodbine House, 2012). Leslie has been awarded as one of the top 1% reviewers on GoodReads and recognized by Jane Friedman as one of the most influential book reviewers. Since 2013, Leslie has interviewed over 700 bestselling and debut authors on her author interview series. Follow her bookstagram posts @leslielindsay1. More about Leslie following interview below.
Check out this exclusive interview and get the behind the scenes scoop about my book, A New Course: A Mother’s Journey Navigating Down Syndrome and Autism:
Artistic photo of book cover designed and photographed by Leslie Lindsay. Join her on Instagram @leslielindsay1 #alwayswithabook for more like this.
Thank you to Leslie Lindsay for a great interview and all your support! 🙂 Next week, I’ll post the virtual book launch activities here on the blog and social media sites listed below. Join A New Course Book Launch page on Facebook to get the latests updates in real time!
That’s what is in my noggin this week. 🙂
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Blog #228~DS-ASD: Parenting During the COVID-19 Crisis
How’s everyone doing at home during this COVID-19 Crisis? The new normal of staying at home has it’s challenges, especially when you have a child with a dual diagnosis of Down syndrome and autism (DS-ASD). My son Nick is 26 years old and usually attends a daily adult developmental day training program. The structure and routine provides meaning to his life. But the Coronavirus has taken that away from him and all of us. So now what? I wish that I could wave a magic wand and show you how to navigate through this quarantine with your kids. I can only offer my perspective on parenting a child with DS-ASD this week. I’ll keep it short, because I suspect we are all overwhelmed.
Last week’s blog provided daily independent living skills ideas to work on at home with your child. Nick did great helping out and I posted daily videos of him in action on our social media sites. We will continue these living skills and also do some activity bins: Home School Activity Ideas:https://nickspecialneeds.com/tag/puzzle-and-mathcing-ideas-for-home/
I think it’s important to cut ourselves some slack right now. This is uncharted territory for all of us.
Here are 5 things I am keeping in my noggin this week, to help navigate thru the COVID-19 Crisis:
*1-Remember to respond and not react when your child gets frustrated, bored and overwelmed. One of the lessons I offer in my book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism(click here to order https://amzn.to/2W3Un6X ) is the following: “Remain calm and matter of fact. You must be a constant in a sea of uncertainty”
*2-Do what you can and don’t beat yourself up. This isn’t the time to put pressure on yourself to play all the roles of a teacher, OT, PT, speech and behavior therapist. Take this opportunity to have fun with your kids and naturally build in learning and interaction around activities that they enjoy. We’ve been turning off Fox News and CNN and instead, snuggling under a blanket and watching old movies that Nick and his older brother Hank enjoyed growing up.
*3-Get some exercise! As a 35 year fitness professional I promise it will boost your immune system and elevate your mood. Go Noodle learning stations has some fun, free movement videos you can do with your kids: https://www.gonoodle.com
*4-I keep reminding myself that we are all in this together and that gives me comfort. It also helps me to tap into a memory that I’ve personally suffered through a lot worse. In August of 1983, Hurricane Alicia left us paralyzed and without electricity for 2 long, HOT weeks down in Houston, Texas. Oh, and thank goodness for humor and all the funny memes being shared on social media 🙂
*5-What am I doing today to make things better for myself and others? 🙂
So, these are the 5 things I am keeping in mind to navigate what appears to be a marathon of social isolation during the Coronavirus crisis. I wish each of you wellness and peace in your homes with your family and plenty of toilet paper for all. We can do this, we’re all in this together!
That’s what is in my noggin this week. 🙂
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Blog #227~Daily living skills you can work on at home with your kids during the COVID-19 Crisis
So, your stuck at home with your kids during this COVID-19 crisis, now what? This is actually the perfect time to work on daily living skills with your kids. Why are these skills important to know?
Let’s go back to the purpose of the Individual Education Plan (IEP): To promote further education, employment and independent living skills.
Often, in our busy lives it’s easier to skip over teaching daily living skills on a consistent basis with our kids. So now that time has slowed down, why not take a few of these skills and hone in on them? Not only will this help your child become more independent, it will also promote confidence, family teamwork and as a bonus– many skills provide sensory input. My son Nick is 26 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). Over the years we have built in many daily living skills into his routine at home.
Here are a few of the jobs that Nick does around the house and how they provide sensory input:
*Recycling (replacement behavior for throwing)
*Can crushing (sensory and motor activity and replacement behavior for throwing)
*Carry laundry basket and load washing machine (heavy work/ organizing)
*Put away groceries (organizing activity)
*Empty Dishwasher (organizing and sensory activity)
*Cleaning/ wiping down countertops and windows (organizing activity)
*Vacuuming (heavy work which is calming)
The following link below is a full list of daily living skills in the areas of self-care, personal hygiene, kitchen skills, home management skills, to name a few. Focus on one or two skills at a time. You can access visuals and task strips off of Google Images and videos on YouTube:
This is a time of uncertainty and anxiety levels are running high for all of us. First of all breathe, our kids take cues from how we are reacting during this crisis. Next, cabin fever is a real thing, so try to enjoy each other and find ways to work together at home. This will benefit the whole family. Give you kids a sense of purpose and foster new skills to bolster their confidence. This will help them grow to become more independent. Be well and don’t forget to keep those iPads charged 🙂
My book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism is packed with more strategies and story about navigating a dual diagnosis of DS-ASD @https://amzn.to/2W3Un6X
World Down Syndrome Day is coming up on March 21st. This day 3/21 was chosen to represent Trisomy 21, where there are 3 copies of the 21st chromosome. WDSD highlights the importance of promoting awareness, understanding, inclusion and acceptance for individuals with Down syndrome. Next week, I will provide concrete ways that you can help promote WDSD.
But what if there is more beyond Down syndrome that families are facing? Did you know that approximately 18% of children with Down syndrome have a secondary diagnosis of autism? This dual diagnosis of Down syndrome and autism (DS-ASD), presents additional challenges with communication impairment that can lead to behavior problems.
Here are some of the signs and symptoms from the National Down Syndrome Society (NDSS) of a dual diagnosis of DS-ASD:
My son Nick, is 26 years old and has a dual diagnosis of DS-ASD. Ten years ago, I started writing about my journey and this new course our lives took, when Nick got a secondary diagnosis of autism. I felt very alone. I found myself pulling away from our local Down syndrome support group activities, because my son no longer fit in. He did not engage like his peers with Down syndrome. His repetitive movements (rocking, hand flapping, unusual play with toys) and vocal humming sounds made him stand out from the crowd. This new course was different than the one I planned. Nick was very delayed in toilet training and his speech deficits lead to behavior problems. As he approached puberty, his lack of speech and understanding what was expected, led Nick to become very frustrated. My son had no voice and his actions led to dangerous meltdowns.
What I soon learned (when Nick was 10 years old), is that I dealing with way more beyond Down syndrome. There was no way that I could navigate this course alone. Once I sought guidance from experts, we were able to give Nick a voice using a picture exchange system (PECS). Together with the IEP team, we determined what behaviors to target and developed a positive behavior support plan (BSP). The two key components that helped Nick was giving him a voice and finding the triggers that were causing behavior problems. We sought help from the school district’s autism specialist. The IEP team then, put supports in place and we all received training to help support the secondary diagnosis of autism. It is critical to identify target behaviors, and make a game plan to support a child before they escalate to a boiling point and have a meltdown. It’s imperative to write in additional supports to address communication including visuals into the IEP. A reoccurring theme in my blogs is the need to address speech and behavior collectively, as all behavior is a form of communication. Visuals are key for communication, but also for navigating daily life in the form of picture schedules, social stories and learning tasks. These visuals are the blueprint for your child to understand what is going on and what you are expecting from them, and in turn helps to reduce anxiety levels.
My mission for the past ten years has been to make this DS-ASD journey easier for families following a similar path, and to open the eyes for other’s to understand the complexities and challenges associated with DS-ASD. This path that I’ve been on with Nick has not been easy. Early Intervention after birth and over the years, was critical to helping Nick reach developmental milestones. Our family has weathered a lot of storms, but with each– the sun came back out and we learned a lot along the way. Now, I am ready to share my journey with you!
I am pleased to announce my book and the journey beyond Down syndrome:
A New Course: A Mother’s Journey Navigating Down Syndrome and Autism launches May 5, 2020 and takes a deep dive into the complexities of what many families face raising a child with a dual diagnosis of DS-ASD. None of us can escape life without challenges. We each have our own journeys and individuals with DS-ASD are unique and may not be as severe as what we experienced with Nick. Our struggles at times were unsurmountable. But if you are an avid reader of my blog– you know that I’ve guided you down a path and showed you how Nick has become the best version of himself given a dual diagnosis of DS-ASD. Each chapter concludes with a 3:2:1 (3 Lessons I learned, 2 takeaways to use in the future and 1 question or concern I had during that particular time). At the end of the book, I’ve included my version of an appendix, with the final lessons I’ve learned on this journey. These final lessons are taken from my blog entries, that I’ve been writing since 2012. A New Course is available for pre-order now on Amazon!
My passion is helping other families navigate this new course beyond Down syndrome. As a DS-ASD consultant, I am determined to assist families to find resources, offer support and guidance to make their journeys smoother. I hope my story opens the reader’s eyes and starts a conversation of what it is like to raise a child with the unique challenges associated with DS-ASD. In doing so, perhaps the reader might gain better understanding, awareness and compassion for families dealing with DS-ASD and other complex special needs.
That’s what is in my noggin this week.
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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:
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. 🙂
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 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:
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.
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Ditch the New Year’s Resolutions: Here’s a Better Idea!
Happy New Year! It’s time to clear the decks and start fresh.🙂 How many times have you made a new year’s resolution and failed to keep it? As a 35+year fitness professional and mother of a son with special needs (DS-ASD), here is my advice: Ditch the old school resolutions and try a different approach!
Here’s what I’ve got for you to get started:
*Great self-care tips and easy ways to build in healthy habits.
*Quick, easy and practical ways to get back into fitness.
*Simple approaches to help your child with special needs to gain independent living skills.