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

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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Blog #237~Autism Acceptance Month

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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Blog #236~Need IEP Help? The New Go-To Guide: Special Education Savvy

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 Savvy is 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.

Blog #235~More than Down syndrome, Co-occurring DS-ASD

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.

Order your copy at https://amzn.to/2W3Un6X

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:

Blog #155~More Than Down Syndrome,DS-ASD – Down Syndrome with a Slice of Autism (nickspecialneeds.com)

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.

~Teresa 🙂

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Twitter @tjunnerstall

MLK Day and Finding the Light in 2021

I’m taking some time to reflect on Martin Luther King, Jr. and his legacy. There is so much negativity and turmoil in our nation. My hope is that we can come together, heal and echo the powerful messages given by Martin Luther King Jr.

Yesterday, another national treasure, Betty White turned 99 years old. I wrote this blog and posted it on the third week of January 4 years ago. This blog is so resonating and timely, given the current distress facing all of us. Happy Birthday Betty White, your wisdom is like an elixer for the fountain of youth and for finding happiness and peace.

Click here to view: Katie Couric interview with Betty White – Down Syndrome with a Slice of Autism (nickspecialneeds.com)

Find the light and positivity each day and make it a ripple effect. That might be a good start towards a better year for 2021. That’s what is in my noggin this week.

~Teresa 🙂

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DS-ASD: 10 Autism Holiday Stress Tips

DS-ASD: 10 Autism Holiday Stress Tips

I am Teresa Unnerstall, a DS-ASD consultant and author of A New Course: A Mother’s Journey Navigating Down Syndrome and Autism (https://amzn.to/2W3Un6X) My son Nick is 26 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD).

Here are my top 10 Autism Holiday Stress Tips to help you navigate the upcoming holiday season. Click the link below to view:

Blog #225~10 Autism Holiday Stress Tips – Down Syndrome with a Slice of Autism (nickspecialneeds.com)

I hope you have a safe and joyous holiday. Remember to give yourself a little extra grace as we deal with the added stress caused by the Covid-19 pandemic. I have pared things down even more this year and striving for simplicity. That’s what is in my noggin this week.

Cheers and Be Well,

Teresa 🙂

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Blog #234~ Chris Nikic YOU are an Ironman!

Blog #234~Chris Nikic, YOU are an Ironman!

Chris Nikic, a 21-year-old triathlete from Florida, has become the first person with Down syndrome to cross the finish line at an Ironman event. The Ironman is widely considered to be one of the most difficult single day sporting events in the world. It is a daunting race which includes swimming 2.4 miles, cycling 112 miles and running a 26.2-mile marathon. The 140.6 mile race must be completed in 17 hours. But Chris Nikic made all the time cutoffs, with time to spare–completing his competition in 16:46:09.

Chris Nikic YOU are an Ironman!

ABC News Feature: https://www.abcactionnews.com/news/region-pinellas/floridas-chris-nikic-becomes-first-ironman-with-down-syndrome

More media stories: https://chrisnikic.com/

So, how did Chris Nikic achieve such an amazing feat? Nikic has been training and competing in triathlons since he was 16 years old as well as the Special Olympics. It is all about hard work, dreaming big, setting goals and crushing them. His training sessions were around 6 hours daily. I am a 37 year fitness professional. I have worked with cyclists, marathon runners, triathletes, Ironman finishers and the 12 time Guinness world record holder for the plank and spinning (George Hood). Each of these athletes are disciplined and passionate. But there is something more–and that is the spirit that comes from the heart. I saw this in Chris Nikic who has the true heart of an Ironman. He adopted a mantra that is very simple but effective: “Give 1 % more each day”.

“If you start walking 100 steps and get 1% Better for 1 year, you will be walking 3,700 steps. If you start with 1,000 steps, in 1 year you will be walking a Marathon.” https://chrisnikic.com/

“I learned that I am willing to work hard and get one percent better every day, then ‘Anything is Possible,’” he replied when asked what it means to him to attempt an Ironman. “But I also learned that I can get my dream.” -Chris Nikic

History was made at this Ironman event. Barriers have been broken, making room for athletes with Down syndrome and other intellectual and developmental disabilities to set goals, dream big and be included. Nikic is a trailblazer, and with each transition from swim, bike to run he brought tears of joy to my eyes and thousands around the world. This all came from a boy, who like my son Nick, didn’t walk until he was 4 or eat solid foods until he was 5. Chris also had heart surgery at five months old and later four major ear operations at age 17.

To Chris, this race was more than just a finish line and celebration of victory,” said his father. “Ironman has served as his platform to become one step closer to his goal of living a life of inclusion, normalcy, and leadership. It’s about being an example to other kids and families that face similar barriers, proving no dream or goal is too high. If Chris can do an Ironman, he can do anything.” -Nik Nikic

Congratulations to Chris Nikic, YOU are an Ironman! Your mantra of doing 1% better going for your dreams, and crushing the Ironman is truly inspirational. That’s what is in my noggin this week.

~Teresa 🙂

Teresa Unnerstall is the mother of Nick, who is 26 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). She is the author of A New Course: A Mother’s Journey Navigating Down Syndrome and Autism (https://amzn.to/2W3Un6X) Follow on social media (Facebook-Instagram @Down Syndrome With A Slice Of Autism, Twitter (@tjunnerstall).

Blog #232~Special Needs Parent and Educator Help During Covid-19

Blog #232~Special Needs Parent and Educator Help During Covid-19

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As a dual diagnosis DS-ASD writer and consultant, I’m scratching my head on how to help special needs families faced with the daunting task of implementing remote distance learning. This is an unprecedented time we are in facing with Covid-19. It’s like a continuous Ground Hog Day with no end in sight. My son Nick is 26 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). He normally attends an adult developmental training program. His program has been closed since March. The focus at home has been to work on independent living skills. So what advice can I offer? What would I do if my son was still in school?

My short answer is this………

“As an IEP team you have to collaborate together and think outside the box on how to navigate distance learning. That means asking for support, visuals, making addendums to the IEP, finding outside resources and therapies. Always lead with the child’s interests and strengths when implementing lessons and goals both at school and home.”

I am going to stay in my lane and introduce you to one of the top experts in navigating IEP’s. Catherine Whitcher’s podcast is packed with great advice on how parents and educators can work together to make education successful during the Covid-19 crisis. You won’t be disappointed and you will learn ALOT!!! 🙂 Click here to listen:

https://www.catherinewhitcher.com/blog/podcastcriticaliepdecisions

In this podcast, Catherine Whitcher explains that you can’t do an IEP meant to be implemented at school in the home. Here are a few key bullet points of her podcast:

*Keep track of what is being tried, what is working and not working.

*Collaborate together to come up with solutions, make adjustments and addendums to the IEP.

*Redefine what is appropriate for this current situation, then come up with a new plan.

You can follow Catherine on Facebook and Instagram where you will learn so much as I have over the years at https://www.catherinewhitcher.com/ She offers up to date, practical information in her blogs, podcasts and live feeds on social media.

Don’t wait for your child to get back into school to make up for lost time. Take action now to make the best out of distance learning by thinking outside the box, collaborating with the IEP team and working with your child’s strengths and interests. That’s what is in my noggin this week.

~Teresa 🙂

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• 

Facebook and Instagram at Down Syndrome with a Slice of Autism

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Blog #230~Book Review: Scoot Over and Make Some Room

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.

 ~Teresa 🙂

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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.

DS-ASD Summer Updates

DS-ASD Summer Updates

It’s been awhile since my last post. It’s been difficult trying to concentrate and write. My son Nick is 26 years old and has a dual diagnosis of DS-ASD. The Covid-19 pandemic has been one of the most challenging times for us. In particular individuals like my son, fail to understand what is going on, why masks are needed and personally what happened to his adult day program? Nick needs structure and scheduled activities to stay regulated.  The earliest that his program might open up is September. I am not even sure he could go back and wear a mask, much less stay socially distant.  The line is moveable, and for all of us the uncertainty is mind-bending.

Regression of behaviors is real and scary right now. There are hints some of the experiences that occurred in the chapter titled “Waves of Fury” in my book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism. Lack of understanding what is going on=frustration leading to more meltdowns since March. The only difference is that we know how to sense the buildup and cut things off at the pass or re-direct him before the behaviors escalate. I fear for both our family and others in the same boat who have a child with special needs and no school or day programs now or for the foreseeable future. So all I can do is take it day by day…. sometimes hour by hour… and breathe.

Here is a link to an article I wrote about this experience: 

@ https://themighty.com/2020/05/supporting-person-down-syndrome-autism-covid-19/? tm_source=engagement_bar&utm_medium=link&utm_campaign=story_page.engagement_bar/

Not everything is doom and gloom this summer. My book A New Course is being well received with 49 five star Amazon reviews, order a copy @ https://amzn.to/2W3Un6X My goal is 59+ to commemorate my upcoming birthday. Amazon and Goodreads reviews are critical to help move a book up in rankings and reach more readers. If you have read A New Course, the best gift you could give me for my 59th birthday is a review!

Here is a stellar testimonial I just received from the author of the gold standard book “When Down Syndrome and Autism Intersect:

“Teresa Unnerstall’s book, A New Course: A Mother’s Journey Navigating Down Syndrome and Autism, captured my heart as she relays her family’s journey which mirrored my own in so many ways. Teresa poignantly shares the challenges and joys that come with parenting a child with DS-ASD. Her book is a true treasure that offers hope, acceptance, and kinship to other like-families and to those who love, support and care for them”.

—Margaret M. Froehlke RN, BSN Author of When Down Syndrome and Autism Intersect, A Guide for Parents Guide for Parents and Professionals

Click here to order your copy of my book: @ https://amzn.to/2W3Un6X

We are on summer vacation break and today is my son Hank’s 28th birthday! You can keep up with Nick’s world and our birthday celebrations on social media! I am posting a bunch of fun pictures. Media sites are listed below with direct access and on my website @ https://teresaunnerstall.com/  Keep your eye open for some fun giveaways including copies of my book to celebrate my birthday. Thank you for following and supporting Nick’s world and my new book. Take care, be well find ways to enjoy your summer and the beauty in each day.

That’s what is in my noggin this week 🙂

~Teresa

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