By Leslie Lindsay
With humor, kindness, and practical advice, mother, writer, and special needs advocate absolutely has all-hands on deck as she traverses the choppy waters of a child with a dual-diagnosis.
~BOOKS ON MONDAY|ALWAYS WITH A BOOK~
Teresa Unnerstall doesn’t tip her toes into the water of Down’s syndrome and autism, she dives head-first into the deep-end. Told with wit, compassion, faith, empathy, brutal honesty, and gentle advocacy, A NEW COURSE: A Mother’s Journey Navigating Down’s syndrome and autism (Kat Biggie Press, May 5 2020) is a beacon of light for a parent traversing the rocky waters of a DS-ASD dual-diagnosis.
I found myself wholly engaged in this book—the worries, the fears, the emotional ups and downs. Teresa proves that she is just like any other mother—but so much more. She created laminated picture cards for her son and taped them to the shower wall so he’d know the steps for self-hygiene. When she wasn’t doing that, she researched behavioral therapies and looked into school programs and advocated for her son. Somedays, she’s cleaned smeared poop then went to teach exercise classes at the local gym.
A NEW COURSE is exactly as it sounds—creating a new normal for you, your family, and the exquisite treasure you were given: your child.
From birth through high school and beyond, Teresa has charted a strong, no- nonsense narrative teeming with set-backs but also love, lessons and hope, plus plenty of take-aways covering fears and anxieties, early intervention, sensory diets, IEPs, speech-language concerns, puberty, behavior management, and so much more. Teresa is an absolute gift to her son, Nick, but you will find her a nurturing and compassionate friend as you navigate the ebb and flow of raising a child—and young adult–with special needs.
Please join me in welcoming the lovely and talented Teresa Unnerstall to the author interview series.
Teresa, I am so taken with this book. I know it’s tugged at you for many, many years. What was the driving force?
I started out writing because there were very few books out there that dealt with the tough topics of raising a child that has multiple intellectual and developmental disabilities. I didn’t want to sugarcoat these struggles. Writing has been cathartic and my way of healing. My driving force– is my mission to help other families navigate a smoother journey, learn from my mistakes, and seek professional help to assist you and your child’s unique challenges associated with a dual diagnosis of Down syndrome and autism (DS-ASD).
I love the structure of A NEW COURSE, the connection to your earlier days growing up sailing, and how every chapter has this lovely theme braided throughout. Can you give us a little background, please?
I grew up racing sailboats on Galveston Bay out of the Houston Yacht Club. For a brief period I raced with the University of Texas Sailing Team (until my GPA dropped). The boat on the cover is the boat we raced, it’s called an Ensign. Sailing teaches you a lot about life. You need to be patient when the wind dies and be prepared to make adjustments, when it’s blowing so hard that your boat is nearly capsizing.
The 3:2:1 tips at the end of each chapter are fabulous. Of course, 321, or trisomy-21 is the gene with the ‘error’ that creates Down syndrome. What can you tell us—simply stated—about the genetics of Down’s syndrome, and also a little overview of your 3:2:1 tips?
Simply stated Down syndrome is an error in cell division, in my son’s case the type is trisomy-21. This is where there is all or part of a third copy present in the 21st chromosome pair. It is usually associated with physical growth delays, intellectual and developmental delays and characteristic physical features.
Incidentally World Down Syndrome Day is held each year on March 21st (3/21) to raise awareness; promote better understanding, acceptance and inclusion for individuals with Down syndrome.
At the end of each chapter there is a 3-2-1 which includes 3 lessons I learned during that time, 2 takeaways to use in the future and 1 question or concern that I had. I added my version of an appendix called “Final Lessons Learned at the Helm.” There are a variety of topics–many of which I have written about since 2012 on my blog. Some of the final lesson topics are therapies, IEP’s, behavior management/ABA, self-help/independent learning skills, visual supports, vacation and travel tips to name a few.
One thing that really resonated for me—as a mother, but also as a mother raising a daughter with a severe speech disorder—is this feeling of being alone that you mention early on in A NEW COURSE. Feeling alone is really a lack of being understood. No one ‘gets it.’ It’s isolating. It’s debilitating. But here, you roll up your sleeves. You find answers. Can you talk about that, please?
Yes, exactly Leslie. The feeling of being all alone is a lack of being understood. That is a great insight. Many times I wondered if I was the only parent experiencing such tough challenges. That is one of the main reasons why I started writing this book because I didn’t want other parents to feel all alone.
I have always had a mindset of finding solutions. I wasn’t even aware of this mindset until I received a plaque from the YMCA where I was the fitness director, (before we relocated to another city). The plaque read in part, “Thank you for your ideas, spirit and zeal… You made a difference”.
Now don’t get me wrong, there were countless times when I got stuck and felt numb, hopeless and sad. I’d would curl up in a ball and have a good cry, yell, swear and hit a pillow. After those pity parties and the when tears dried I let the anger fuel me. My anger was towards the things that I couldn’t fix or make easier for my son. I refused to let whatever I encountered, get the best of me. That was when (and still is) the time that I roll up my sleeves, seek help and find a better way to help my son navigate his world.
We should mention that Nick has an older brother, Hank, who is neurotypical. While A NEW COURSE is mostly about your journey with Nick, I’m curious about how Hank fit into story. There were times he was supportive of Nick, and other times, he was exasperated by his brother’s antics. How can families reconcile the high needs of one child with the less-immediate, but no less important needs of another child(ren)?
Hank is 19 months older than Nick, and in many ways the typical sibling relationship exists. I think most siblings are supportive and exasperated with each other growing up on occasion. Here’s my advice, it’s important to find a balance in the amount of time and attention you spend with each child. Sometimes when Nick was at speech or occupational therapy, Hank and I would go to the mall, specifically to the Game Stop and the food court. My husband and I made a conscious effort to have “buddy days” with just Hank.
Another tip I write in the final lessons is to work together as a family and prioritize schedules and therapy treatments. You shouldn’t let the disability overrun your family life.
Finally, seek out sibling support groups. We went to the national Down syndrome convention years ago and they had a full breakout for siblings. Hank got to meet a former Miss America contestant and also Chris Burke (actor from the 1980’s television show “Life Goes On”). It was a great experience for him. Next month, Hank and I will be presenting virtually at the National Down Syndrome Society (NDSS) Adult Summit. I will be doing a session called “Beyond Down Syndrome” and Hank will be a part of the panel for siblings.
I adore how the boys—and especially Nick—really connected with animals and nature. For example, the little town of Tomball, Texas and hippotherapy. Can you share a little about that time, please?
We lived outside of Houston at the time, Nick was 1 and Hank was almost 3 years old. The early intervention program Nick attended offered hippotherapy (therapeutic horseback riding) out in Tomball, Texas. At the time Nick because of his low muscle tone (a trait associated with having Down syndrome) was unable to sit unsupported. Flanked on either side by volunteers and a physical therapist he rode a horse wearing a helmet to help get more core strength. Afterward, both boys would help brush the horses and feed the animals on the farm. It was a great sensory experience that also taught them both lessons in taking care of animals and compassion.
What I admire most about A NEW COURSE is your honesty. You say there were times you ‘lost it,’ felt depressed, yelled at Nick. You admit your imperfections. But you also take care of yourself. You play tennis, teach exercise, garden, write, and found ways for respite care for Nick. I think all of this is key, the self-care. Can you expand on that, please?
Yes, I wanted to tell my story honesty and unfiltered. Life is not perfect, and I aim to keep it real. I have been a fitness professional for over 35 years. I want my participants to work hard, have fun (laugh at my dumb jokes) feel good and be inspired. These fitness classes are an escape from problems– a little oasis from the grind of life. Teaching these classes is a big part of who I am and helps me to feel normal.
Self-care is essential to be the best version of ourselves. It’s not being selfish when you carve out time each day to do the things that bring you pleasure (although my participants would say the walking lunges and 3-minute planks give them more pain than pleasure). Self-care is about taking time to love yourself and feed your soul.
We applied for state funding which provides funding for respite care. These respite care workers take Nick out in the community, work on goals and give us as parents a much-needed break. It allows me to continue to teach classes, go out with girlfriends and for my husband to play tennis and golf with his buddies, along with an occasional night out.
Nick is now 26 years old and doing quite well. He lives at home with you and Al and attends a developmental day training program. Can you catch us up to speed? Does he know about the book?
At age 22, a student with an intellectual and/or developmental disability will age out of the school system. It is crucial to have a plan in place once the yellow bus stops coming to the door. For the past 3+ years Nick has been attending an adult developmental day training program. The program includes functional and academic work stations, vocational skills, crafts, exercise, shopping, cooking, entertaining theme days/parties and community outings. Nick loves this program and thrives on the structure it provides him.
Regarding the book, Nick’s cognitive level is not at a point where he can read words (although he can recognize logos that are meaningful to him like Taco Bell and Culvers). He enjoys looking at the social media posts and pictures of himself on our Facebook and Instagram sites. I know he will love being a small part of the Zoom calls and Facebook live posts we have planned for the virtual book launch.
Teresa, this has been fabulous. Thank you. I could ask questions all day, but is there anything I might’ve have asked, but didn’t?
Yes, one question is- What are the pain points of A NEW COURSE?
How I navigated early intervention, IEP’s/education placement, speech/OT and physical therapies, behavior support/ABA, toilet training and puberty issues, wandering/elopement, meltdowns and augmentative and alternative communication.
What does a support group look like for a dual diagnosis?
This is an area that is lacking in many parts of the country. Most families dealing with a dual diagnosis feel like they don’t fit into the Down syndrome groups or the autism support groups. The deficits in speech, behavior and sensory issues inhibit families from taking part in those group activities, so they stop going to DS support group events. I work directly with a DS support group in the San Francisco Bay area as their DS-ASD consultant. We are putting programs in place to support families who are dealing with a dual diagnosis.
I hope A NEW COURSE is a call to action for DS support groups to better support their families that deal with a dual diagnosis. Research suggests that approximately 18% of families having a child with DS also have a secondary diagnosis of autism.
What do you hope your book will reveal to readers?
Honestly, I hope that A NEW COURSE is a wake-up call for families dealing with a dual diagnosis about the need to seek help when navigating DS-ASD. But just as important, that my book will wake up Down syndrome support groups, educators, therapists, medical professionals, friends, extended family, and the general population to better understand the complexities that families face, so that they, in turn, can find a way.
Artistic photo of book cover designed and photographed by Leslie Lindsay. Join her on Instagram @leslielindsay1 #alwayswithabook for more like this.
For more information, to connect with Teresa Unnerstall via social media or to purchase a copy of A NEW COURSE: A Mother’s Journey Navigating Down Syndrome and Autism, please see:
~READ Teresa’s RECENT ARTICLE in The Mighty about parenting a special needs child during COVID-19~
ABOUT THE AUTHOR:
Teresa Unnerstall is a writer, advocate, speaker, and consultant specializing in the dual diagnosis of Down syndrome and autism (DS-ASD). She has contributed articles to The Mighty along with several Down syndrome support groups across the country. In addition, Teresa has been writing a weekly blog about her son Nick, who has DS-ASD (Down Syndrome with a Slice of Autism at http://www.nickspecialneeds.com) since 2012. Teresa has been a guest lecturer and advocate at Northern Illinois University and Aurora University. She holds a bachelor’s degree in kinesiology and health education from the University of Texas and has been working in the fitness field for more than thirty-five years. Teresa and her husband, Al, have two sons, Hank and Nick. She lives in the Chicago area.
ABOUT YOUR HOST:
Leslie Lindsay is the award-winning author of SPEAKING OF APRAXIA (Woodbine House, 2012). Her work has been published in Pithead Chapel, Common Ground Review, Cleaver Magazine (craft and CNF), The Awakenings Review, The Nervous Breakdown, Ruminate’s The Waking, Brave Voices Literary Magazine, Manifest-Station, and others. Forthcoming photography to appear in Up the Staircase Quarterly and Another Chicago Magazine; poetry to appear this summer in Coffin Bell Journal; CNF in Semicolon Literary Magazine. 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.
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~Updated, 2nd edition of SPEAKING OF APRAXIA forthcoming from Woodbine House late summer 2020~
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[Cover and author image courtesy of T. Unnerstall and used with permission. Artistic photo of book cover designed and photographed by Leslie Lindsay. Join her on Instagram @leslielindsay1 #alwayswithabook for more like this.]