Tag: Autism Acceptance Month

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

Blog #258~When Down Syndrome and Autism Intersect

Posted on by Teresa Unnerstall

Blog #258~When Down Syndrome and Autism Intersect

As Autism Acceptance Month winds down, I want to highlight a great new resource for families, medical professionals, clinicians, teachers and caregivers who are supporting an individual with a dual diagnosis of Down syndrome and autism. Did you know that research shows that about 16-18% of people with Down syndrome also have autism spectrum disorder (DS-ASD) (Autism Speaks: Richards et al., 2015). Navigating the DS-ASD journey is complex and challenging, I’ve been on this road with my son Nick, for 30 years. Thankfully, the top experts in the field have joined together to create this new resource that was just published: The second edition of When Down Syndrome and Autism Interesect: A Guide to DS-ASD for Parents and Professionals, by authors Margaret Froehlke, RN, BSN and Robin Sattell, MS.

Order here: https://a.co/d/fbIBv0z

UNLOCK THE WORLD OF DS-ASD

“The first edition of When Down Syndrome and Autism Intersect was the first book to focus on the unique profile of a Down Syndrome-Autism Spectrum Disorder (DS-ASD) diagnosis. Now with this greatly expanded, updated second edition, it remains the only book for parents and professionals offering a comprehensive guide to supporting individuals with this complex dual diagnosis. Written by a large team of veteran parents and experts in the field, it covers every aspect of caring for children and adults with DS-ASD. Full of good will and respect for the DS-ASD community, this book offers sound information and resources steeped in research and clinical findings. It is also grounded in respect and concern for the parents’ need for specialized supports. Families will find a treasure trove of anecdotes and practical advice, discovering that they are not alone as they continue on their DS-ASD journey.“

This new book is a game changer for the DS-ASD community. It compiles the most up-to-date, evidenced based research, best practices and strategies to support individuals with DS-ASD. I had the honor of being a contributor in chapter 10, “Understanding Communication, Behavior and Sensory Strategies”. When Down Syndrome and Autism Intersect is the essential guide to help understand, navigate and empathize this complex and often difficult journey. I look forward to sharing more about the contents of this book with you in future blogs.

That’s what is in my noggin this week.

~Teresa 🙂

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Posted in Autism, Autism Spectrum Disorder (ASD), Dual Diagnosis Down syndrome and autism

Blog #244~ Kicking off Autism Awareness Month with Forever Boy

Posted on by Teresa Unnerstall

Blog #244~ Kicking off Autism Awareness Month with Forever Boy

April is Autism Awareness-Acceptance Month. I want to kick it off with the book release of Forever Boy by Kate Swenson, creator of Finding Cooper’s Voice.

Available on Amazon https://amzn.to/3K8nw8N , Barnes and Nobles, Target and more

Forever Boy is a memoir of Kate Swenson’s journey as the mother of Cooper, who was diagnosed with severe, non-verbal autism. There were many resonating stories in her book I related to and wrote candidly about in my book, A New Course: A Mother’s Journey Navigating Down Syndrome and Autism (https://amzn.to/2W3Un6X). My son Nick is 28 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). It’s very hard to open up about some aspects of life with autism, I applaud Kate for her honesty and beautiful writing style.

There have been many obstacles to overcome in order to support my son Nick. Autism is a spectrum disorder and when your child is profoundly disabled, the barriers can be many. Imagine not being able to speak verbally and how frustrating it would be. Communication and behavior go hand in hand. Every behavior is communicating an unmet need or struggle. As a parent, it is heartbreaking to see your child struggle. Forever Boy takes you through the pain and joy that Kate and her family experienced in a humble and a heartfelt way.

So, let talk about the hard. Supporting a child with severe, non-verbal autism includes advocating for services, support, providing appropriate education and finding a way to give your child a voice. As I mentioned earlier, every behavior, including the maladaptive behaviors are communicating an unmet need or struggle. Individuals with autism can also have difficulties self-regulating. When a situation becomes overwhelming, and reaches a boiling point, the end result can be a meltdown. This is the hard. In Forever Boy, I felt the sweat, fear and bruises that often follow a meltdown. But what is much worse, is the feeling that your child is struggling in a world that doesn’t often understand them.

“Speak your truth. Even if you voice shakes. Share your life.” ~Kate Swenson, Finding Cooper’s Voice

Another “pain point” that families on the severe side of autism experience is isolation. It might be fear for your child’s safety due to elopement or worry that certain social settings might be too overwhelming. Sometimes, it’s just easier to stay home or do shorter visits to prevent stimulus overload and having stress chemicals build up, which can result in a meltdown. (To understand this better, I highly recommend following The Autism Discussion Page, on Facebook. Bill Nason provides a wealth of information about autism that is very easy to understand for parents. He also has user friendly guides available for purchase.)

The book Forever Boy opens the curtains to what severe, non-verbal autism looks like from a mother’s perspective. You will feel the love and joy as well as the struggles and heartbreak. This book will educate, inspire and empower parents, teachers, professionals and anyone interested in learning more about how to support individuals and their families. Thankyou Kate for being vulnerable and sharing your journey. Thank you for showing the beauty of Cooper, his unique abilities and giving hope to others. Many families on this journey will benefit from knowing that they are not alone.

“Once you make it through, help another parent. Text them. Call them or go to them. Sit with them in the dark. Be the person you needed in the beginning.” ~Kate Swenson

My goal is to help others and make this path of DS-ASD easier and more understandable. I look forward to sharing more about supporting individuals and their families this month. That’s what is in my noggin this week.

~Teresa 🙂

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Posted in Autism, Autism Spectrum Disorder (ASD), Dual Diagnosis Down syndrome and autism

Blog #238~Autism: Welcome to My Life… Sleep Number is Zero

Posted on by Teresa Unnerstall

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.

Available on Amazon at
https://amzn.to/2Df6qbL

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.

That’s what is in my noggin this week.

~Teresa 🙂

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Posted in Autism, Autism Spectrum Disorder (ASD), Dual Diagnosis Down syndrome and autism

Blog #237~Autism Acceptance Month

Posted on by Teresa Unnerstall

Blog #237~Autism Acceptance Month

There is a shift occurring this April with Autism Awareness Month. Let’s face it autism awareness doesn’t mean much without acceptance too. It’s not just a shift in the terminology of “autism awareness” to “autism acceptance”, you may notice new symbols like the rainbow infinity taking the place of the puzzle piece imagery (as many believe that the puzzle symbol evokes a negative connotation as a problem that needs to be solved). To keep you in the loop, the rainbow infinity sign represents neurodiversity, here’s more:

Rainbow Infinity Sign represents neurodiversity

“Neurodiversity is the idea that autistic people add diversity to the world, and that disability is part of the human experience. Neurodiversity advocates oppose the idea of an Autism “cure,” and want to focus more on helpful and respectful therapies. They believe that Autistic people should be accepted in society.” Autism Acceptance Month Call to Action: Commit to Being Inclusive. – Key Assets Kentucky

Whether it’s promoting with rainbow infinity symbols or puzzle pieces I think the emphasis should be on the movement from autism awareness to acceptance. My son Nick is 27 years old and has a co-occurring Down syndrome and autism (DS-ASD). According to Autism Speaks, “Over the next decade, an estimated 707,000 to 1,116,000 teens (70,700 to 111,600 each year) will enter adulthood and age out of school based autism services.” That is a staggering statistic as autistic children grow up to become adults in need of safe housing, medical care insurance, family (inclusive and accessible) public restrooms, meaningful employment and adult day program opportunities. Acceptance requires understanding along with providing supports and accommodations.

We need to accept the fact that 1 in 54 children born in the U.S. are diagnosed with autism and they along with their families need support and opportunities to be fully included in society. What if we celebrated differences and became more understanding of individuals with autism? For my son Nick, it would mean respecting his need for routine, sameness and space, to be accepting of his need to rock, sway, flap his hands and make verbal stimming sounds to help keep himself regulated. It would also mean looking beyond these self-stimulatory behaviors to see his unique abilities and strengths.

This Autism Acceptance Month I challenge you to do more than just be aware of autism. Here are a few suggestions:

*Read and share books about autism like my book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism available on Amazon at: https://amzn.to/2W3Un6X

*Follow The Autism Discussion Page on Facebook where you will gain a better insight some of the challenges associated with autism. Bill Nason has a series of books that are toolkits to individuals with autism feel safe, accepted and competent: Autism Discussion Page on the Core Challenges of Autism: A Toolbox for Helping Children with Autism Feel Safe, Accepted, and Competent: Nason, Bill: 9781849059947: Amazon.com: Books

*Read and share books with your children and local libraries: 30 Best Children’s Books About the Autism Spectrum (appliedbehavioranalysisprograms.com)

*Donate and join autism support groups like The Down Syndrome-Autism Connection which has been in operation since 2007, and is the only non-profit in the United States dedicated solely to co-occurring Down syndrome and autism. They have given over 2,000 families around the world a place to belong. This month you can donate to my team @ https://givebutter.com/xrKt9I. Learn more about the connection at http://www.ds-asd-connection.org.

*Show kindness and respect for how autistic individuals need to process the world around them and understand that they shouldn’t have to conform to the norms when expressing themselves.

This April for Autism Acceptance Month and moving forward, I encourage you to learn more about understanding autism. Understanding leads to acceptance. Let’s celebrate unique personalities and abilities and also show compassion for the challenges and struggles faced by individuals with autism and their families.

That’s what is in my noggin this week.

~Teresa 🙂

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