Posted in Dual Diagnosis Down syndrome and autism, Education and Special Needs, IEP (Indivdualized Education Plan), Parenting Special Needs

Blog #247~DS-ASD Back to School Tips

Blog #247~DS-ASD Back to School Tips

This week I have 10 back to school tips and strategies specifically geared to individuals with a dual diagnosis of Down syndrome and autism (DS-ASD) and their families. My name is Teresa Unnerstall, I am a DS-ASD parent, consultant and author of A New Course: A Mother’s Journey Navigating Down Syndrome and Autism. My son Nick is 28 years old and my passion is to help families, educators, therapists, medical professionals and anyone interested in supporting individuals with co-occurring DS-ASD.

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

10 Back to School Tips for DS-ASD Families:

1. Prepare the student with a visual countdown calendar, and re-instate morning/evening routines.

2. Tour the school with your child. Then, create a social story or video social story of the school settings and staff that the student will be interacting with. Review this story regularly for the first few weeks of school.

3. At the tour, ask the teacher to show you the safety & hygiene precautions, accommodations and equipment that is listed in the IEP to make sure everything is in place.

First Then Visual Accommodation
Teaching feelings visual accommodation
Nick using the Smart Board

4. Prepare a student “About Me” profile sheet. There are many templates available online that you can Google or try Canva for free. You can include different sections such as, Things I love, My Strengths, What Works Best for Me, How to best support me, What I struggle with and Interests. Make several copies to share with the staff.

5. Determine the modes of communication back and forth with the teacher and school staff. Examples include texting, email, communication logs/notebooks and daily report sheets. This is very important as many students with DS-ASD who have language deficits or may be non-verbal and unable to share how their day went.

Daily Report Sheet

6. Review the child’s IEP to insure that all goals and accommodations are still relevant and meaningful. Note any additional needs or concerns you have coming off of the summer break and share these with the staff.

7. If the student has a behavior support plan (BSP), check to see if this has been shared with all staff and is ready to put in place on day one. Make a list of any new target behaviors that need to be addressed and added into the BSP.

8. If the student uses AAC (Augmentative and Alternative Communication) make sure the teacher and aides are familiar with how to use the program, whether it’s high tech or low tech like a picture exchange system (PECS). You can request a training for staff and parents on how to program devices, navigate tabs and get trained on how to utilize PECS with the school speech and language therapist or school district AAC specialists.

AAC Touch Chat Program

9. Students may have lost skills or experienced regression over the summer break. Evidenced-based practices help students regain lost skills and develop new ones. Some examples are using visuals, schedules, task strips, task analysis, first-then prompts, visual timers, choice boards and sensory breaks.

Sensory Break PECS IconIs there a sensory break area at your child’s school?
Time Timer App
Countdown Timer App
Choice Boards
Work Station Accommodation

10. Show your commitment by staying on top of your child’s progress. Ask for data at each quarter. Data drives decision making for future conferences and IEP meetings. If possible, volunteer at school, (room parent, field trip chaperone, art awareness presenter, book fairs, picture day and assisting with making learning materials like laminating and making copies).

Being prepared and invested in your child’s needs will help them reach their full potential for the new school year. That’s what is in my noggin this week.

~Teresa 

Follow us on Facebook and Instagram for more ideas and stories:

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

Blog #246~ DS-ASD at the NDSC Convention 2022

Blog #246~DS-ASD at the NDSC Convention 2022

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.

Click here to order:  https://amzn.to/2W3Un6X

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 the Rock Stars of the Down Syndrome World at NDSC Convention 2022:

Heather Avis author, podcaster and advocate with The Lucky Few more at https://www.heatheravis.com/about
Noah’s Dad and Hope Story Advocates Rick and Abbie Smith more at https://hopestory.org
Advocate and author Tim Harris more at https://www.globaldownsyndrome.org/news-community/quincy-jones-exceptional-advocacy-award-recipients/tim-harris/

Sophia Sanchez, actress, model, author, advocate and influencer more at http://www.sofia-sanchez.com/bio
Trailblazer, advocate and author David Egan more at https://davideganadvocacy.com
GiGi and Nancy Gianni of Gi’Gi’s Playhouse. More at https://www.gigisplayhouse.org/
Ruby’s Rainbow provides scholarships to individuals with DS for higher education. More at https://rubysrainbow.org/about/

The Down 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. The Down 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”!

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

Click above to follow on Facebook, Instagram and Twitter
Posted in Adult Day Programs for Special Needs, Autism, Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #245~DS-ASD Update

Blog #245~DS-ASD Update

What does life look like now for Nick since the pandemic hit over 2 years ago? It’s very different, uncomplicated and often redundant. Sometimes it feels like the movie Ground Hog Day, with the same thing happening over and over. It’s not a sad life, it’s just a different life. My son is 28 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). This week, I want to paint a picture of what life is like for Nick and our family these days and how we make his days meaningful so he knows his value and worth.

For 10 years I wrote diligently and posted a blog each Monday. Then the pandemic hit and Nick’s adult developmental day training program shut down. Well over 2 years later, he still sits idle on their waiting list hoping to get back in. Part of the reason my blogs have been sporadic is due to taking care of Nick at home, while I continue to work. This is no easy feat when you are trying to tune out the many sounds of autism. Since my book, A New Course: A Mother’s Journey Navigating Down Syndrome and Autism, was published in May of 2020, many doors have opened up to presentations, workshops, webinars and podcasts. It has been very rewarding doing these projects and sharing strategies on how to navigate co-occurring Down syndrome and autism. Later this month I will be presenting in person at the National Down Syndrome Congress (NDSC) in New Orleans!

Order on Amazon at https://amzn.to/2W3Un6X

So, here’s a look at our new normal for the past two years. For most of us, this has been remote work, Zoom presentations and meetings which has been a great vehicle to reach a large audience across the country. Creating these presentations doesn’t feel like work, it’s exciting and creative. But, it can be difficult to concentrate when your son is constantly tapping, verbal stimming, pushing the microwave fan button, throwing things and running the water faucets. Nick also goes down some interesting YouTube rabbit holes. Lately he’s been diving down to find some real “gems”. This includes finding Thomas the Tank Engine the dark side, (picture Thomas with a black eye and goatee and guns blazing). Another gem has been fire alarm testing. Despite our efforts to clear the history on YouTube, he keeps finding those blaring alarms. It’s obviously fulfilling a sensory need he craves. Better on his iPad and not on a real fire alarm. 🙂

As I mentioned earlier, Nick’s day program has been a no go due to staffing shortages. It’s devasting to see that individuals with disabilities who are the most vulnerable, can’t get into day programs. Despite hefty signing bonuses being offered, many day programs continue to struggle with staffing. We have done our best to create some structure at home and provide him with personal support workers who assist him at home and with community activities outside the house. Structured teaching activities benefits include developing and maintaining educational and fine motor skills.

Structured Teaching Activities
Activities include matching, sorting office supplies and puzzles

Nick also has several jobs around the house which include unloading the dishwasher, recycling, vacuuming, and helping to prepare meals. These jobs along with the structured teaching activities are meaningful and bolster his confidence.

Nick unloading the dishwasher
Working at home

In addition to in home activities, Nick also enjoys going out into the community with his personal support workers. Having respite care is important for families, so each member gets a break and can go out and enjoy time on their own.

Fun at the Park
Lunch date with personal support worker

The new normal at home with Nick is working largely due to having wonderful personal support workers and offering meaningful activities. We have looked into other day programs, but most have waiting lists or lack the staffing to accommodate Nick’s needs. So, we just keep leaning into the new normal and doing the best we can to find balance in both our work and Nick’s needs. As a mom, it gives me comfort to hear him say “happy” and lean into life at home. Even if it does include those trips down the YouTube rabbit hole.

That’s what is in my noggin this week. 🙂

~Teresa

Follow us on Facebook and Instagram at Down Syndrome with a Slice of Autism
Posted in Autism, Autism Spectrum Disorder (ASD), Dual Diagnosis Down syndrome and autism

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

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 🙂

Follow us on social media, links in the website above
Posted in Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism

Blog #243~ World Down Syndrome Day, 3/21

Blog #243~World Down Syndrome Day, 3/21

March 21st is World Down Syndrome Day, 3/21. My son, Nick has Trisomy 21 which means there are 3 copies of chromosome number 21. The theme for 2022 is “Inclusion Means”. People with Down syndrome still fight barriers that keep them from being fully included in their community and society across the globe. Meaningful and gainful employment opportunities are difficult to come by. Parents and individuals with Down syndrome continue to advocate to have opportunities to be included in a world where everyone belongs.

Understanding Down syndrome is the first step to help individuals to feel accepted and included. Sharing our stories and posts on social media is another great way to shift the narrative of what people perceive about individuals with Down syndrome. I encourage you to get to know the person with Down syndrome instead of just knowing about Down syndrome.

This month on my social media sites, I have done 21 posts so you can get to know my son Nick better. He is 28 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). Follow us on Facebook and Instagram at Down Syndrome with a Slice of Autism. Use some of the hashtags shown at the bottom of this post when sharing posts on social media. Learn about our journey in my book, A New Course: A Mother’s Journey Navigating Down Syndrome and Autism

Order your copy here: https://amzn.to/2W3Un6X
and ask your library to carry it!

Thank you for your support and help promoting World Down Syndrome Day and following our journey. That’s what is in my noggin this week.

~Teresa 🙂

Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #241~ DS-ASD in Praise of Caregivers

Blog #241~DS-ASD In Praise of Caregivers

November is National Family Caregivers Month, it is a time to recognize and honor caregivers across the country. Did you know that there are over 65 million Americans caring for aging and disabled loved ones in the US? My son, Nick has a dual diagnosis of Down syndrome and autism (DS-ASD). We are very fortunate to have wonderful caregivers to support him. This allows us to work, get out and enjoy activities outside the home.

The needs of individuals with DS-ASD are complex and behaviors can be challenging. It can easily burn out family members trying to manage it all alone. Families can access funding for respite care by checking to see if their state has a Medicaid waiver or other programs for individuals with a disability.

For more information click here:

https://www.medicaid.gov/medicaid/home-community-based-services/home-community-based-services-authorities/home-community-based-services-1915c/index.html

https://www.medicaid.gov/medicaid/section-1115-demo/demonstration-and-waiver-list/index.html

I want to honor the amazing caregivers who work with our son, Nick. He enjoys their company at home and out in the community. The Medicaid home and community based service plan here in Illinois pays personal support workers who also work on goals for Nick to keep up with his skills and communication.

Nick and Miss R.
Nick and Miss R. at the pumpkin patch
Nick with Jodi and Kelsey
Nick is a bit smitten with Kelsey
Nick and Lisa

As I mentioned earlier, Nick enjoys their company. On many occasions he will grab pictures of the caregivers out of his Picture Exchange Communication System (PECS) book and hand them to me. A PECS book helps Nick to communicate his wants, needs and feelings. Individuals with DS-ASD can benefit from using pictures to express themselves. It is very evident that Nick loves each of them and they have all become part of our family.

Thank you to Miss R., Jodi, Kelsey and Lisa for your love and support. We praise all that you do for Nick and our family. We honor you this month and every day of the year! That’s what is in my noggin this week.

~Teresa 🙂

For more information and link to my book: https://amzn.to/2W3Un6X

Posted in Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism

Blog #240~ October is Down Syndrome Awareness Month

Blog #240~October is Down Syndrome Awareness Month

down-syndrome-awareness-month

October is Down Syndrome Awareness Month. My son, Nick is 27 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). As a parent, writer and advocate, my mission is to educate others to better understand more about Down syndrome and autism. Down syndrome awareness is about promoting understanding, acceptance and inclusion of all individuals with Down syndrome in all aspects of our society.

Click here to get the facts about Down syndrome: http://www.ndss.org/Down-Syndrome/What-Is-Down-Syndrome/

Here’s how YOU can promote Down syndrome awareness and acceptance:

🙂 Post information and stories about individuals with Down syndrome on your social media platforms. You can follow many inspiring individuals on Facebook and Instagram like Nick at #Down Syndrome with a Slice of Autism. Here are a few of my favorites: #noahsdaddotcom #calebs_crew #brittanysbaskets #chrisnikic #dsdn #chucklesandmeatloaf #nothingdownaboutit #sean_from_born_this_way #troymadeit #abigail_the_advocate #theluckyfew #aceismyfriend

🙂 If you are a parent of a child with Down syndrome, send updates, pictures and tell your story to your family doctor and OB/GYN. Consider becoming a Hope Advocate-You will get a custom hope kit to distribute to your OB/GYN and family doctor. More information https://hopestory.org/sign-up/

🙂 Your local Down syndrome support groups have promotional materials, like books and bookmarks that can be distributed at libraries and schools.

🙂 Down syndrome support groups have public speakers available to talk with schools, businesses, community groups, hospitals, and other organizations.

🙂 Support or volunteer for local fundraisers like the Buddy Walk in your community https://www.ndss.org/play/national-buddy-walk-program/ .

🙂 The Down Syndrome-Autism Connection is the gold standard organization supporting DS-ASD families @ http://www.ds-asd-connection.org/. I am looking for 21 people to donate just $21 for the 3-2-1 Caring and Sharing fundraiser to directly help families navigating a dual diagnosis. Click here to donate @ https://givebutter.com/l6BUl8/teresaunnerstall

🙂 Encourage your kids to volunteer for Special Olympics and Best Buddies programs through their school.

🙂 Use and promote “person first language” to respectively speak about a person with a disability. Individuals with Down syndrome should always be referred to as people first. Instead of “a Down syndrome child,” it should be “a child with Down syndrome.” Also avoid “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.”

🙂 My book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism is helping so many readers understand both Down syndrome and a co-occurring Down syndrome and autism (DS-ASD). It’s available on Amazon, plus there are share buttons you can utilize for social media to help spread awareness. Order and donate a copy to your local library @ https://amzn.to/2W3Un6X 

This image has an empty alt attribute; its file name is a-new-course-book-cover-multiple-books.jpg
Order your copy today at https://amzn.to/2W3Un6X

Thank you for supporting and sharing all about Down syndrome awareness this month! That’s what is in my noggin this week.

~Teresa 🙂

Follow us on Social Media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram @nickdsautism

Twitter @tjunnerstall

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

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 🙂

Follow us on social media:

Laurie Hellman’s blog, podcast links at http://www.lauriehellmann.com

Our Facebook and Instagram at Down Syndrome with a Slice of Autism and Twitter @tjunnerstall

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

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 🙂

Follow us at Down Syndrome with A Slice of Autism on Facebook and Instagram and @tjunnerstall on Twitter

Posted in Down syndrome, Dual Diagnosis Down syndrome and autism

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 🙂

Follow on Social Media

Facebook, Instagram and Pinterest at Down Syndrome With A Slice Of Autism

Twitter @tjunnerstall