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

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

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 🙂

Follow Us:

Facebook and Instagram at Down Syndrome with a Slice of Autism

Twitter @tjunnerstall

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

Blog #233~Down Syndrome Awareness Month

October is Down Syndrome Awareness Month. My son, Nick is 26 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). As a parent, writer and advocate, I strive 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.

FACTS about Down syndrome from National Down Syndrome Society (NDSS):

*Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.

*There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95 percent of cases, translocation accounts for about 4 percent and mosaicism accounts for about 1 percent.

*Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.

*There are more than 400,000 people living with Down syndrome in the United States.

*Down syndrome occurs in people of all races and economic levels.

*The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women younger than 35.

*People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.

*A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.

*Life expectancy for people with Down syndrome has increased dramatically in recent decades — from 25 years old in 1983 to 60 years old today.

*People with Down syndrome attend school, work and participate in decisions that affect them, and contribute to society in many wonderful ways.

*All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.

*Quality educational programs, a stimulating home environment, good health care and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

More information @ http://www.ndss.org/Down-Syndrome/What-Is-Down-Syndrome/

Here are a few simple ways to promote Down syndrome awareness:

*Post information and stories about individuals with Down syndrome on your social media platforms.

*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- where you will get a custom hope kit to distribute to your OB/GYN and family doctor. More information @ https://hopestory.org/sign-up/

*Many 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/ . This month The Down Syndrome-Autism Connection is doing a 3-2-1 Caring and Sharing fundraiser to directly help families navigating a dual diagnosis. I will be posting more about this on social media. Find out more about this awesome support group @ http://www.ds-asd-connection.org/

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

*Always use and promote “people 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.”

down-syndrome-awareness-month

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 share @ https://amzn.to/2W3Un6X You can also order my book on other platforms and read chapter one for FREE @ http://www.teresaunnerstall.com. I appreciate the 70+ awesome five star Amazon reviews. Your support and sharing A New Course on your social media sites is spreading great awareness and understanding. I will be doing some more giveaways this month for everyone who shares my book on social media!

Thank you for supporting 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, Down syndrome, Dual Diagnosis Down syndrome and autism, Education and Special Needs, IEP (Indivdualized Education Plan), Parenting Special Needs

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

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

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 🙂

Follow on Social Media:

Facebook and Instagram at Down Syndrome with a Slice of Autism

Twitter @tjunnerstall