Just another WordPress.com site, Here to help you navigate co-occurring Down syndrome and autism. My son, Nick is 30 years old and living his best life as an adult with DS-ASD.
Category: Resources for Special Needs
Topics, websites and information specific to special needs for parents and their child.
The challenges faced by individuals with co-occurring Down syndrome and autism (DS-ASD) are complex. These can include communication deficits, cognitive delays, sensory processing issues and rigidity. Transitions can be tough, moving from one activitiy to another, changing venues, staff and caregivers can all be stressful. Predictability and consistency are key components which help individuals with DS-ASD cope in a world that moves fast. My son Nick is 29 years old, and has co-occurring DS-ASD. Many of the families that I’ve worked with over the years find transitions to be hard to navigate. There are many evidenced based practices which can help support your child.
Here are 5 Tips for Taking on Transitions:
1. Figure out “the why”. Do a little detective work to determine what might be triggering the resisistance to moving forward. Possible antecedents might be sensory overload (loud noises, crowds, etc), changing from a preferred activity to a non-preferred activitiy, not understanding what comes next and not feeling in control. These are just a few examples of why they might be struggling. Once you determine the function of the behavior, then you can put some supports in place.
2. Use a visual schedule to help provide an effective cue to move to another activity or venue. There are many apps available as well including First-Then, Kids ToDo List, and Visuals2Go.
3. Allow for processing time. Give advance notice when an activity is coming to an end, and when it will be time to move to the next. Visual timers are great tools to help with transitions. Here are two of my favorite timer apps which include the Countdown Timer and Timed Timer:
4. Create a social story to help provide a clear and predictable framework for what will happen next, what to expect and how navigate a new experience. Use the social story like a pre-game rehearsal. This allows the individual to understand what to expect, how to behave and give them a “buy in” to the transition.
5. Give verbal and non-verbal praises and provide a reward such as a transition object to help motivate the child. “Good job walking and staying close”, thumbs up/smiley face icons, high fives can all reinforce successful transitions made throughout the day. Transition objects guide the child over the bridge that encourages moving from point A to point B. The object should be highly preferred, motivating and limited access so that it keeps their interest.
Providing support for individuals with DS-ASD to assist with transitions can ease stress by helping them understand what will be happening throughout the day. It also allows the child to feel more in control over their life. For more information and tips on navigating co-occurring Down syndrome and autism, scroll the archives of this blog and check out my book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism click to order here: https://amzn.to/2W3Un6X
That’s what is in my noggin this week 🙂
~Teresa
Follow us on social media: #Down Syndrome with a Slice of Autism
Blog #256~Guest Blog: 10 Pillars of Independence Made Simple, by Steve Friedman
As National Family Caregiver Month comes to a close I want to highlight a great resource for families having a loved one with Down syndrome and DS-ASD. Steve Friedman has written an excellent book to help caregivers navigate future planning with an emphasis on helping your loved one become as indepedent as possible. As a parent to my son Nick who is 29 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD), my concerns in the area of future planning are at an all time high. I found the information and book that Steve wrote very helpful.
10 Pillars of Independence Made Simple by Steve Friedman
It’s never too early nor too late to make a plan!
Whether your loved one with Down syndrome is 1 or 51, contemplating independence can be overwhelming.
*What does independence actually mean to you and your family?
*What are your options for independence pillars such as education, work, and housing?
*How much does independence cost and what benefits may help?
*How do we find out about all benefits and how do you apply for each?
*What are the important legal documents and how/when do I consider them?
*What health issues should be considered for your self-advocate’s future?
It’s a lot!
10 Important Pillars to Consider
1) Mindset – In the past, the shock of newborn parenting led to a world of limitations and protection. But now people with Down syndrome are working meaningful jobs, going to college, they’re having deep relationships, and living on their own. It is time to believe in the possibilities for our sons and daughters, for ourselves, and for our communities!
2) Independence Team – always put your loved one first. Insist they are at the ARD meetings. Be sure the doctor is talking TO them, not around them. This is important for their self-esteem and it’s their lives, after all.
YOU are the NEXT most important member of the team. You know your son or daughter best. Advocate for THEM – not for you – every day. Include others in your team that can provide support, challenge, and perspective like teachers, doctors, therapists, extended family, and those angels that somehow find us along the way.
3) Work is a great self-esteem booster. I’ll never forget Gwendolyn’s beaming face when she started her first job. She still lights up when talking about work with friends and family. Utilize government resources to find a job but if that fails, and it might, create a resume and march out and talk to friends and local businesses until you find the right fit. Remember, you are not offering a charity, you are offering a hardworking, energetic team player.
4) Keep learning…beyond high school. Our loved ones have a long runway of learning. But if they stop, if they go home and sit on the couch all day, they will stop learning. They’ll plateau and they’ll regress. Continuing education, whether through a quality day program, inclusive college program, or homeschooling-style exposure, is critical.
5) Know common health issues for adults with Down syndrome. In our book we talk about 7 – all of which people with Down syndrome are AT LEAST twice as likely to get as the general population and, in some cases, 7x more likely. These include sleep apnea, obesity, celiac disease, hypothyroidism, depression, Autism, and Alzheimer’s. Many of these are genetic and not preventative, but you can still be prepared. Others benefit from healthy habits from an early age. In all cases, the earlier you are aware of these and work with your doctors to diagnose and treat these, the better life you offer your loved one. Oftentimes, even the best doctors will attribute symptoms to Down syndrome without digging deeper to identify specific health issues they can treat. We need to be sure to educate ourselves and our doctors.
6) Benefits are perhaps the biggest mystery of all. Until now, there’s not been a place to find a full list, understand how to qualify and where to apply, and just as importantly, how to maintain eligibility. In my discussions with parents, it never failed that they were unfamiliar with at least one of these benefits. Independence is beautiful…and independence is expensive. Are you on a Medicaid waiver program or waitlist? Do you know about SNAP or HIPP? Be sure your son or daughter gets all the benefits they deserve.
7) Did you know your son or daughter with Down syndrome is due Social Security benefits whenever either parent is either disabled, retires, or passes away? These benefits can be significant and typically don’t compromise the parent’s benefits in any way. But you must be aware of your loved one’s income and asset limitations in order to maintain eligibility. A wrong step, even if unknowingly, can cost your family hundreds of thousands of dollars! These same limits can jeopardize their own SSI and Medicaid, so be aware!
8) Guardianship is a major topic when our loved ones reach 18. I know this can be a controversial issue. On the one hand, we want to provide responsibility and authority to our self-advocates so why spend the time and money in court to take guardianship away from them? On the other hand, if they don’t have a legal guardian, they may have to make all critical decisions themselves. That includes some of the complex financial decisions we just touched on as well as health decisions, often in times of illness. In those circumstances, they can ask for your advice, or they can choose not to, or be convinced by others not to consult the parents altogether. And if others don’t feel your loved one can make the best decisions in a time of need, they can bring the state in to counsel your loved one. These decisions are just too complex for any one person in our family. We want to make sure Gwendolyn’s health and financial well-being are best protected. We are sure to include her in meetings and decisions that affect her, but we maintain guardianship. If you haven’t considered guardianship in detail, it is never too late to do so.
9) There are other legal instruments you should be aware of to protect your loved one’s benefits, including Special Needs Trusts, ABLE accounts, and letters of intent. Look into each one of those.
10) Finally, consider your housing options. We never thought about it much. We assumed Gwendolyn would always live with us. We were a bit ashamed to even consider her not living at home. But then, we realized three critical items:
a. We recognize that the best way for Gwendolyn to learn and grow was to explore moving out from under our protective umbrella just as her brother and sister have done.
b. We found there is a wide variety of options from small to large, public to private, admittedly shady to absolutely awesome. We just had to invest the time in the process to find the RIGHT place for Gwendolyn.
c. Finally, we recognize we will not be able to provide Gwendolyn with the best environment as we age so rather than leave that to chance, we wanted to be part of her housing choices.
There are a wide variety of housing options today. We did a lot of research –visiting over 15 places across Texas before we found the right place for Gwendolyn. Our loved ones are living longer and wanting more. Consider your housing options today.
The Essential Guide for Families with Down Syndrome was created to remove the mystery.
“This book is essential for ALL parents, guardians, loved ones, and direct support professionals who care for a person with a disability.” -Tracy Keninger, Easterseals Iowa
“This is an excellent resource in navigating our own decisions to better support the goals and dreams of those we love.” -Tara Goodwin, Parent and DO, QuestCare Medical Clinic Dallas
“This practical guidebook lays out the critical steps for building independence. Steve Friedman provides comprehensive planning tools, paired with thoughtful parent perspectives. This is a great resource which covers all areas of life for individuals with Down syndrome along with their families.” -Teresa Unnerstall, DS-ASD Consultant and author of A New Course: A Mother’s Journey Navigating Down Syndrome and Autism
The Essential Guide provides step-by-step support to:
*Inspire mindset shifts toward one of independence and possibilities
*Foster independence building blocks from the earliest age
*Highlight health risks and financial resources every family must know
*Detail educationand work optionsto promote community inclusion
*Evaluate family-and community-based homeoptions includingsearch process
The Guide presents action items and worksheets to equip you with a clear timeline and path. The resources and references sections will save you time and money in your search for information and organizations that support your family’s journey.
“As parents, we are the experts of our loved ones, and this is an excellent resource in navigating our own decisions to better support the goals and dreams of those we love.” Tara Goodwin, D.O., Adult Down Syndrome Clinic, QuestCare Dallas
Friedman intersperses relatable and inspiring stories from a wide array of families. Insights from many experts in the fields of communications, education, health, and financial planning provide the confidence and guidance for you to navigate your family’s path toward independence.
Beyond Down Syndrome is proud to donate a portion of all book sales proceeds to LuMind IDSC to support Down syndrome research specifically focused on the link with Alzheimer’s disease. Did you know that 12% of the US population will be afflicted by Alzheimer’s but 95% of the Down syndrome community will have Alzheimer’s by the age of 65, often exhibiting first signs decades earlier. Together we can make a difference!
Steve Friedman BIO
The Friedman Family has always been tight-knit. Everyone supports each other including oldest daughter, Gwendolyn, and her quest for success. After Gwendolyn graduated high school, she became uber-focused on all facets of independence from continuing education, work, moving out, and self-advocacy. Over the past ten years Gwendolyn has achieved many of wishes and the family documented steps and resources along the way. Steve is a three-time award-winning author who loves to connect with families on his website and with podcasts and engaging workshops.
Thank you to Steve Friedman for the great information on this guest blog which will help many families and caregivers. For more information and to purchase a copy of his book click here: https://www.beyonddownsyndrome.net/
Blog #255~Down Syndrome Awareness Month: Extra Good Reads
October is Down Syndrome Awareness Month. My son Nick is 29 years old and has a dual diagnosis of DS-ASD. I’ve been writing this blog since 2012, to help educate and inspire families and professionals.
This week I want to highlight some good reads related to Down syndrome. There are many books on Amazon available with a variety of topics related to Down syndrome. Here are a few books that I highly recommend, that will both educate and inspire you.
Extra Good Reads about Down Syndrome:
A New Course: A Mother’s Journey Navigating Down Syndrome and Autism by Teresa Unnerstall order here: https://amzn.to/2W3Un6X
The Essential Guide for Families with Down Syndrome: Plan and Actions for Independence at Every Stage of Life by Steve Friedman Order your copy here: https://a.co/d/gMxuiU3
A Parent’s Guide to Down Syndrome, Advice, Information and Support to Raising Your Child from Diagnosis to Adulthood by Jen Jacob and Marda Sikora. Order here: https://a.co/d/5CRwU6R
Supporting Positive Behavior in Children and Teens with Down Syndrome, Revised Edition, The Respond, Don’t React Method by Dr. David Stein, Psy.D. Order here: https://a.co/d/8rlEeJG
Down Syndrome Parenting 101: Must Have Advice for Making Your Life Easier by Natalie Hale order here: https://a.co/d/7LebF7H
Babies with Down Syndrome: A New Parent’s Guide, Edited by Susan J. Skallerup order here:https://a.co/d/bU6CyTv
Scoot Over and Make Some Room: Creating a Space Where Everyone Belongs by Heather Avis order here: https://a.co/d/3QMtl0w
Teaching Children with Down Syndrome about Their Bodies, Boundaries and Sexuality by Terri Couwenhoven, M.S. order here: https://a.co/d/gARb2kE
Fine Motor Skills for Children with Down Syndrome, A Guide for Parents and Professionals (third edition) by Maryanne Bruni, BScOT (Reg) order here: https://a.co/d/8au2far
Gross Motor Skills in Children with Down Syndrome: A Guide for Parents and Professionals by Patricia C. Winders, P.T. order here: https://a.co/d/9F4DUV4
Gifts: Mother’s Reflect on How Children with Down Syndrome Enriched Their Lives, Edited by Kathryn Lynard, order here: https://a.co/d/fJ4ZgAj
Gifts 2: How People with Down Syndrome Enrich the World, Edited by Kathryn Lynard Soper, order here: https://a.co/d/5ltSrSH
Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges by Dennis McGuire, Ph.D. and Brian Chicoine, M.D. order here: https://a.co/d/cbOhBLC
Different A Great Thing to Be by Heather Avis and Sarah Mensinga, order: https://a.co/d/3VL4z16
You Are Enough: A Book About Inclusion by Margaret O’Hair and inspired by Sophia Sanchez order: https://a.co/d/hRsKJAu
My Friend Has Down Syndrome by Jennifer Moore-Mallinos, order here: https://a.co/d/aSRCijS
These Down syndrome good reads are excellent resources for parents, families and professionals. Keep them in mind as gifts for the upcoming holiday season. In addition, many local Down syndrome support groups across the country provide lending libraries with these resources for families. Thank you for sharing and supporting us as we raise awareness and acceptance to celebrate Down Syndrome Awareness Month.
That’s what is in my noggin this week.
Teresa 🙂
Follow us on Facebook and Instagram at Down Syndrome with A Slice of Autism
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.
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 theRock Stars of the Down Syndrome World at NDSC Convention 2022:
TheDown 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. TheDown 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”!
Wait IconTime Timer App
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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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.
~Teresa 🙂
Follow us on social media on Facebook and Instagram @ Down Syndrome with a Slice of Autism and on Twitter @tjunnerstall.
May 5, 2020 was going to be one of the most important days of my life. This was the date I planned to launch my book, A New Course: A Mother’s Journey Navigating Down Syndrome and Autism.
May 5th was the perfect date, tying in Cinco de Mayo and Taco Tuesday to the launch party and book signing. I had a beautiful venue lined up complete with a taco bar and cocktails. I chose this date because it was just a week or so before Mother’s Day and at the height of the IEP season. Two days later, we had plans to fly to Arizona where I would speak at the National Down Syndrome Society (NDSS) Adult Summit.
Then everything we planned came to a screeching halt……..
My son Nick is 26 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). His adult developmental day training program like all the schools, shut down in March. Across the country we all sheltered in place. There was no break–no respite care–no where to go and no way out. The lockdown was a moveable line that just kept pushing further with each passing month. Nick didn’t understand why he had to stay home, he became frustrated with the lack of structure and limitations. You can read about this experience with Nick and sheltering in place, by clicking below:
So, I rolled up my sleeves and focused on marketing. A hybrid publisher does the bulk of the leg work, taking the pressure off the author and ensuring that the particulars are taken care of properly.
Here’s a breakdown of the book marketing plan:
*Identify key influencers and offer an advanced reader copy of the book in return for promoting and endorsing the book.
*Create and build followers on A New Course Book Launch Party group on Facebook.
*Do consistent posts on social media including Facebook, Instagram and Twitter (links listed below).
*Closely follow the marketing plan outlined by my publishing team using the Trello Board.
*Submit articles to magazines in related field and to Bublish.
*Find podcasts in the field that may be interested in DS-ASD and the book.
*Visit my author page at https://www.teresaunnerstall.com to view all the News/ Events including virtual events, promotions, podcasts and accolades.
As for the actual launch date on May 5th we had to go to plan B. Here is what that looked like:
*Go live on Facebook three times doing author Q&A’s and reading chapter excerpts.
*Promotional giveaways of swag bags– prize drawings for friends who share & tag posts and pictures of themselves (or their pets) with my book.
*Small gathering of seven people outside, socially distant at 6 feet apart–with a parade featuring the local fire department. (Nick has a thing for fire alarms–all 55 pulls since 3rd grade).
*Zoom Cinco de Mayo parties with margarita toasts.
Here are some pictures highlighting book launch day 🙂
As you can see, a book launch can be done even during a Covid-19 Pandemic lockdown. Like so many other major events in 2020 such as graduation ceremonies, proms, sporting events, birthdays and other special occasions–you find ways to make the best lemonade out of lemons–or margarita’s on Cinco de Mayo. 🙂
I would like to thank Alexa Bigwarfe and the publishing team at Kat Biggie Press, https://katbiggiepress.com for laying out an excellent blueprint on the Trello Board. This board carefully organized media materials, a marketing plan and submissions from the publishing team. My publisher also lent support with social media and guidance through all phases of publishing journey. One lesson I learned from Alexa Bigwarfe and my dear friend and best-selling author, Lisa McCubbin is this:
The marketing and outreach doesn’t stop after your book is published. Keep pushing to find new avenues to promote and market your book, because if you stop–your book sales will die.
It’s been three months since my book came out and I am pleased to announce that A New Course has 56 Five Star Amazon reviews and it was a top non-fiction book on Library Bub in July. It is being well received by parents, extended family & friends, educators, therapists and physicians across the country and globe. Top leaders and authors in the field of Down syndrome and autism are endorsing A New Course! Best of all, my book is getting into the hands of readers and helping families understand how to navigate a dual diagnosis, validate their feelings, struggles and offering hope for the future with their child.
Finally, I want to thank my family, friends and launch team who supported me through this writing, blogging and publishing journey. I appreciate the pep talks, shares, tags, pictures and book reviews submitted on Amazon and Goodreads. The BEST way to thank an author is to leave them a BOOK REVIEW on Amazon or Goodreads! The more reviews I get, the better chance my book can get into the hands of more readers–Please keep submitting your reviews, they are critical for book sales! You can still join in on the action, get the inside scoop, backstories and a chance to win reader appreciation prizes on our Facebook group: A New Course Insiders Book Club.
So that’s how we managed to launch a book with success during the Covid-19 Pandemic and make the most out of an impossible situation here in 2020. That’s what is in my noggin this week. Be well and thank you for being a part of this journey with Nick and my book A New Course.
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. 🙂
~Teresa
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Facebook, Instagram and Pinterest @Down Syndrome with a Slice of Autism
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:
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:
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.
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.
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.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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This week, I’ve provided a list of some summer program ideas and links for children with special needs. My son, Nick is 25 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). Over the years he has participated in a variety of programs. Here is a blog I wrote a couple of years ago, highlighting some great programs for individuals with special needs:
Honesty, I was uncertain about attempting some of the programs, given Nick’s dual diagnosis of DS-ASD. It’s important to at least try new things and keep expanding your child’s horizons. As the saying goes, “you never know, until you try it”. That’s what is in my noggin this week.
~Teresa 🙂
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Blog #222~Dear Doctor, A Down Syndrome Diagnosis, is a Hope Story
What is the right way for a doctor to deliver the news that your baby has Down syndrome either pre-natal or at birth? Over the weekend, I received a link from Nothing Down, called Dear Doctor http://www.nothingdown.org/The short film link, interviewed parents who shared their experiences with their doctor. The delivery of the news of a Down syndrome diagnosis was often cold, stoic, and grim. In some cases, the doctors told the parents what their child couldn’t do, while others were offered the option to terminate the pregnancy. So how should a doctor deliver the news to parents that their baby has Down syndrome? Educating medical professionals, communities, and advocating for inclusion and acceptance, are some of the goals during the month of October, which is Down Syndrome Awareness Month. The more you understand Down syndrome, the less fear you will have about the navigating the challenges associated with the diagnosis.
I’m excited to share a new program that is going to change the way many medical professionals will deliver a pre-natal or birth diagnosis of Down syndrome. It’s called Hope Story!
Hope Story’s Mission:
“Hope Story 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.”
Hope Story Helps 3 Main Groups:
*Parents whose child received a diagnosis of Down syndrome.
*Parents who have a child with a diagnosis of Down syndrome.
*Medical Professionals
Hope Story will be providing kits to advocates who will partner with medical professionals. Hope Advocates will inform, educate and allow doctors to get to know someone with Down syndrome on a personal level. Tools in the Hope kit contain valuable information on how to deliver a diagnosis of Down syndrome, and a preferred language guide to help talk about Down syndrome with dignity, respect and hope. In addition, the Hope booklet addresses concerns a new parent may have about Down syndrome. Other tools include welcome letters, announcements, business card and training videos for Hope advocates.
I’m looking forward to being an advocate for Hope Story, and the opportunity to work with medical professionals on delivering a positive pre-natal or birth diagnosis of Down syndrome. Giving hope to other families who have a child with Down syndrome, has been the fuel for my writing for many years. One thing I wish someone would have told me 24 years ago, when my son, Nick was born is this:
Babies and children with Down syndrome have to work harder with physical, occupational and speech therapy to hit developmental milestones, and yes it may take longer, but they will and it hit them, and it will be grand!
My son Nick, age 24 🙂
As we close to the end of October and Down Syndrome Awareness Month, I feel optimistic about the future of individuals with Down syndrome. We are moving beyond awareness, to acceptance and inclusion in society. The future looks much brighter, with more opportunities for individuals with Down syndrome. I’ve highlighted many success stories all month in my blogs, and social media listed below. Education and understanding about Down syndrome is the key, and Hope Story is taking charge to help medical professionals and parents. When you have knowledge and hope, the fear subsides.
That’s what is in my noggin this week. 🙂
~Teresa
Follow Nick and view more about Hope Story and the Dear Doctor film on social media:
Facebook and Pinterest @Down Syndrome With A Slice Of Autism
Down Syndrome with a Slice of Autism 