Tag: Autism

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

Blog #258~When Down Syndrome and Autism Intersect

Posted on by Teresa Unnerstall

Blog #258~When Down Syndrome and Autism Intersect

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

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

UNLOCK THE WORLD OF DS-ASD

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

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

That’s what is in my noggin this week.

~Teresa 🙂

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Posted in Autism, Behavior/ ABA, Down syndrome, Dual Diagnosis Down syndrome and autism, Education and Special Needs, Resources for Special Needs

Blog#257~DS-ASD=Taking on Transitions

Posted on by Teresa Unnerstall

Blog #257~DS-ASD=Taking on Transitions

The challenges faced by individuals with co-occurring Down syndrome and autism (DS-ASD) are complex. These can include communication deficits, cognitive delays, sensory processing issues and rigidity. Transitions can be tough, moving from one activitiy to another, changing venues, staff and caregivers can all be stressful. Predictability and consistency are key components which help individuals with DS-ASD cope in a world that moves fast. My son Nick is 29 years old, and has co-occurring DS-ASD. Many of the families that I’ve worked with over the years find transitions to be hard to navigate. There are many evidenced based practices which can help support your child.

Here are 5 Tips for Taking on Transitions:

1. Figure out “the why”. Do a little detective work to determine what might be triggering the resisistance to moving forward. Possible antecedents might be sensory overload (loud noises, crowds, etc), changing from a preferred activity to a non-preferred activitiy, not understanding what comes next and not feeling in control. These are just a few examples of why they might be struggling. Once you determine the function of the behavior, then you can put some supports in place.

2. Use a visual schedule to help provide an effective cue to move to another activity or venue. There are many apps available as well including First-Then, Kids ToDo List, and Visuals2Go.

3. Allow for processing time. Give advance notice when an activity is coming to an end, and when it will be time to move to the next. Visual timers are great tools to help with transitions. Here are two of my favorite timer apps which include the Countdown Timer and Timed Timer:

4. Create a social story to help provide a clear and predictable framework for what will happen next, what to expect and how navigate a new experience. Use the social story like a pre-game rehearsal. This allows the individual to understand what to expect, how to behave and give them a “buy in” to the transition.

5. Give verbal and non-verbal praises and provide a reward such as a transition object to help motivate the child. “Good job walking and staying close”, thumbs up/smiley face icons, high fives can all reinforce successful transitions made throughout the day. Transition objects guide the child over the bridge that encourages moving from point A to point B. The object should be highly preferred, motivating and limited access so that it keeps their interest.

Providing support for individuals with DS-ASD to assist with transitions can ease stress by helping them understand what will be happening throughout the day. It also allows the child to feel more in control over their life. For more information and tips on navigating co-occurring Down syndrome and autism, scroll the archives of this blog and check out my book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism click to order here: https://amzn.to/2W3Un6X

That’s what is in my noggin this week 🙂

~Teresa

Follow us on social media: #Down Syndrome with a Slice of Autism

Posted in Down syndrome, Dual Diagnosis Down syndrome and autism, Feeding, Personal Hygiene, Toileting, Independent living skills, Parenting Special Needs, Self-care for special needs parents

Blog #252~DS-ASD:Teaching Personal Hygiene and Independent Living Skills at Home

Posted on by Teresa Unnerstall

Blog #252~DS-ASD:Teaching Personal Hygiene and Independent Living Skills at Home

The importance of teaching personal hygiene and other independent living skills at home can’t be emphasized enough. Parents, caregivers, teachers and aides are all on the front lines to support individuals with a dual diagnosis of Down syndrome and autism (DS-ASD). My son Nick is 29 years old and has DS-ASD, and honestly one of the most challenging areas to teach is personal hygiene. One thing that I have learned over the years is that it is never to early or late to work on these skills. This week we will examine specific skills and strategies to teach your loved one with DS-ASD.

Personal Hygiene and Independent Living Skills at Home:

*Using the toilet

*Putting clothes in the hamper/ hanging up towel

*Picking out clothes to wear/ dressing skills

*Brushing Teeth/ flossing

*Washing hands & face

*Putting on deodorant

*Shaving

*Beauty Regimens

*Menstrual cycle cleanliness

*Bathing/ showering & drying off

*Brushing hair

*Blowing nose

*Clipping nails/ tolerating and desensitizing nail clipping

From the list above, consider the strengths of your child, start with a more preferred activity and build from there. Offer support using visuals or visual modeling with breakdown of the steps. Here are a few examples, many of which you can get from Google Images and YouTube. Consider whether the child responds better to understanding actual photographs, videos or Picture Exchange Communication(PECS) Symbols. Many speech and occupational therapists have visual supports that they can share with you. So, be sure to ask your child’s school or private therapists for these as well.

Washing Hands Routine:

Shaving Photo Visuals on a Key Ring:

Video Modeling of Brushing Teeth:

Over the years, we have used all of these visual supports and modeling techniques to teach these tasks. It can be very beneficial to work with a BCBA behaviorist who can help target skills, breakdown the steps and practice on a consistent basis. The BCBA can also build in schedules and rewards to help support and motivate your child.

Here are some great resources for teaching personal hygiene and boundaries by author Mary Wrobel:

Independent living, hygiene and home management skills help to build confidence, a sense of ownership and belonging. Building these skills sets will give your child more jobs/day program and housing options when they become an adult.

To view more independent living skills click on the two previous blogs:

Blog #250~DS-ASD:Teaching Independent Living Skills
Blog #251~ DS-ASD: Independent Living Skills at Home

We hope that you have gained some insight and strategies for building independence from the past three blogs #250-252. Our goal and passion is to make this road of a dual diagnosis easier for other families. We also want to inspire you as a parent, teacher or caregiver to help your child reach their full potential. 🙂

For more information on navigating co-occurring DS-ASD in my book. Click here to order: https://amzn.to/2W3Un6X

That’s what is in my noggin this week.

~Teresa 🙂

Follow on Social Media:

Posted in Behavior/ ABA, Down syndrome, Dual Diagnosis Down syndrome and autism, Independent living skills, Parenting Special Needs

Blog #250~DS-ASD:Teaching Independent Living Skills

Posted on by Teresa Unnerstall

Blog #250~DS-ASD: Teaching Independent Living Skills

The ultimate goal for parents, teachers and caregivers is to help the child reach their full potential and become as independent as possible. I am a parent to a soon to be 29 year old son who has a dual diagnosis of Down syndrome and autism (DS-ASD). I strive and struggle daily to help my son Nick, but also coach and encourage and other families by offering strategies to assist their children. Independent living skills teach kids how to be responsible and give a sense of accomplishment. How do you start teaching these skills? That’s what I want to focus on for this week’s blog and it’s also a goal that I set for myself and Nick this year.

5 Tips for teaching independent living skills:

*Meet the child where they are at and build activities around their strengths

*Use visual schedules, task strips, token boards, modeling/video modeling, point prompts and hand over hand techniques

*Start with a preferred activity and include fun tasks

*Focus on one area or task at a time and build from there

*Use a highly preferred reinforcer that is motivating to your child

The first thing to do when starting to teach a skill is to identify an activity or task. Then, you want to meet the child where they are at according to their skill level. It’s helpful to pick something that you can build around the child’s strengths. My son Nick is very good at matching and knowing where things belong. He’s always had a keen eye and we play upon this strength. It helps to focus on one area of the house at a time. Let’s start with the kitchen, what tasks could your child do?

Kitchen Task Ideas:

*Help load or unload the dishwasher/ wash and dry dishes

*Wipe down countertops and windows

*Sweep and mop floor

*Feeding pets

*Help with garbage and recycling/ can crushing

*Set the table

*Assist in meal preparation and making choices of food and snacks

*Sweep and mop floor

*Put away groceries

Using visuals can help the child make choices and understand the steps involved by breaking down the task. Schedules and token boards give the child a clear beginning and end to what is expected and provide predictability. Task strips like the one below help to break down the activity into smaller steps:

Nick’s kitchen tasks includes unloading groceries and the dishwasher and emptying the recycling container to the outdoor bin. When the weather permits, he helps push the garbage and recycling bins to the curb. This is followed by a highly preferred reward= Sprite. Nick also helps with meal prep and wiping the countertops down. He takes great pride in his jobs and this gives him a sense of accomplishment.

These jobs didn’t happen overnight. Over the years we’ve used visuals to teach tasks but also modeling/ video models, using the hand over hand technique and fading back to point prompts. It can be a a lot of frontloaded work getting started and teaching your child. Working with a BCBA behaviorist can be very beneficial in identifying target behaviors and building the skill set to complete living skills independently.

This blog will be the first of many to focus on teaching independent living skills around the house. Nick and I will take you through one room at a time. Our goal and passion is to make this road of a dual diagnosis easier for other families. We also want to inspire you as a parent, teacher or caregiver to help your child reach their full potential.

That’s what is in my noggin this week.

~Teresa 🙂

For more information on navigating co-occurring DS-ASD in my book. Click here to order: https://amzn.to/2W3Un6X

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

Blog #249~DS-ASD New Year Goals

Posted on by Teresa Unnerstall

Blog #249~DS-ASD New Year Goals

Happy New Year and we hope you had a nice holiday. The Christmas decorations are packed away. Now, a clean slate is laid out for 2023. There is something hopeful about starting a new year. It’s an opportunity to re-set, make goals and resolutions. At the same time, those resolutions can often fall by the wayside leaving you feeling like a failure. I have those moments as a parent of a child with a dual diagnosis of Down syndrome and autism (DS-ASD). My son Nick is 28 years old, and he lives at home with us. He has not been able to go back to his adult day program or qualify for any others. This is due to staffing shortages and the complexities of behaviors and communication deficits associated with DS-ASD. Fortunately, we have a state waiver that pays for respite care and a great team of caregivers who work with Nick. This enables us to work and enjoy leisure activities that are so important for self-care. Today, Nick completed his structured teaching activities independently as he does each day at home. These activities are part of his routine which is a great way to support individuals with DS-ASD. He is very good at them and feels accomplished.

Nick doing structured teaching activities independently 🙂

Nick has settled in covered with his weighted blanket and tappers in hand. This morning he is watching classic Thomas the Tank Engine season 3. I use to feel guilty that he wasn’t watching age appropriate shows. But now I realize, this gives him a sense of comfort, much like the Bravo and Hallmark shows do for me. So, as I write this piece these questions roam in my mind:

*What more can I do to support my son?

*How can I help him be more independent?

*What else can I do to redirect and manage his behaviors?

*Do I have the bandwidth to accomplish this, run the household and work my outside jobs?

One of the worst things about being a parent and caregiver is the guilt that we feel about not doing enough for our children. This is where I want to talk about my new years goals, and what I want to share with other DS-ASD families. My goal and hope for you this is year to be kind to yourself, by entering and exiting each day with grace. I am going to remind myself and other families that this DS-ASD journey that we are on is challenging, exhausting, frustrating and uncertain. We are going to stumble, but we also get up and do it all over again each morning. I am going to forgive myself when I am impatient, and I want you to do that too. I plan on reminding myself that deep inside the ongoing passion and love for my child is what fuels me to support and advocate for him and other families…… and I am going to remind you of this in my writing and presentations for 2023.

Let’s take a deep breath, laugh, cry and celebrate those successes together. Remember this: The fact that you are reading this blog, searching for answers and trying your best is a testimony of a good and loving parent. Know that you are not alone in this journey. May we all feel optimistic for the new year and let that hope carry us through the rough patches. The DS-ASD journey includes many stumbles and falls, but a back step can also become a cha-cha. I’ll be here to prop you up when you fall, sharing ideas, strategies, empathy, hope and encouragement. That is my passion and commitment to my son and other families on this path. Cheers to the new year and exercising self-care by being kind to ourselves.

That’s what is in my noggin this week.

~Teresa 🙂

Learn more about navigating co-occurring DS-ASD:

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Posted in Adult Day Programs for Special Needs, Autism, Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #245~DS-ASD Update

Posted on by Teresa Unnerstall

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

Posted on by Teresa Unnerstall

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

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

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

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

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

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

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

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

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

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

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

~Teresa 🙂

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

Blog #242~ Gift Ideas that Support Individuals with Down syndrome and other Disabilities

Posted on by Teresa Unnerstall

Blog #242~Gift Ideas that Support Individuals with Down syndrome and other Disabilities

This image has an empty alt attribute; its file name is rs=h:500,cg:true
https://specialsparkle.com/

Are you looking for unique gifts that help to support young adults with Down syndrome and other disabilities? This week, I have assembled a list of 7 small businesses that offer some awesome merchandise. I have personally bought products from each of these businesses. You can find out more below and follow them on Facebook and Instagram.

My name is Teresa Unnerstall and I am a parent to a 27 year old son with a dual diagnosis of Down syndrome and autism (DS-ASD) and the author of A New Course: A Mother’s Journey Navigating Down Syndrome and Autism. My book is available on Amazon, click below to order a copy for Christmas. (For more book recommendations click over to the resource page on this blog site.)

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

7 Small Businesses that Support Individuals with Down syndrome and Other Disabilities:

1.Special Sparkle: Kelly is a young lady with Down syndrome and this company was created to assist Kelly in leading a fulfilled and productive life after school came to an end for her.  She loves fashion, style and bling. Check out her jewelry line here: https://specialsparkle.com/

Meet Kelly — The One of a Million Project
https://specialsparkle.com/

2. 21 Pineapples Shirt Company: Nate Simon has always been known as a fashion icon. The company’s mission is to change the way others perceive people with Down Syndrome & other special abilities one Hawaiian Shirt at a time. A percentage of all sales will go directly to support Down Syndrome organizations throughout the world. Check out his merch at https://21pineapples.com/

Mom-And-Son Duo From Beverly Use New Hawaiian T-Shirt Business To Advocate For People With Down Syndrome
https://www.21pineapples.com

3. Candidly Kind: Grace Key started candidly kind to spread light love and acceptance thru her original art and life. Candidly Kind gives a percentage of every sale to charities who share the candidly kind vision to spread light, love and acceptance. It is a huge part of Grace’s mission…giving back. Check out her line at: https://www.candidlykind.com

https://www.candidlykind.com

4. Margrit Co Jewelry: Margrít Co. is a designer jewelry brand that focuses on creating unique, colorful and lightweight jewelry for women of all ages. Margrit Co. gives 15% of all retail sales to our Down with Business scholarship fund, which benefits ministries and businesses owned and operated by individuals with Down Syndrome. Owner and Designer Maggie Blair’s youngest brother Matthew is 18 years old and has Down Syndrome and works alongside her as the shipping manager. Check out her beautiful jewelry collection here: https://margritco.com/

Meet Maggie Blair Dietrick of Margrit Co. in Waco - Voyage Dallas Magazine | Dallas City Guide
https://margritco.com

5. River Bend Gallery showcases the photography by Geoffrey Mikol and is located in downtown Galena, Illinois. His work is mainly of nature and landscapes. Check out his beautiful photography gifts here https://www.riverbendgalleries.com

https://www.riverbendgalleries.com

6. Bitty and Beau’s Coffee: With over 80% of people with intellectual and developmental disabilities unemployed nationwide, the Wrights believe that Bitty & Beau’s Coffee creates a path for people with disabilities to become more valued, accepted and included in every community. Check out their merchandise here:

Shop

7. Seanese Shirts: Is owned by “Born This Way” star, Sean McElwee. The name of the company came from what Sean’s family called his speech as a child. Now, his funny phrases are being immortalized on swag. Each shirt features a phrase and graphic design, and all designs are approved by Sean. Each month, 10 percent of profits go to a disability non-profit.

You can find a wide variety of t-shirts on Sean’s website at https://seanese.com

Cyber Monday Buy any Two items... - Sean from Born This Way
https://seanese.com

Nick and I would like to wish each of you a Happy Holiday. Thank you for supporting our work to educate, inspire and advocate for individuals with a dual diagnosis of DS-ASD and other disabilities. We look forward to sharing more with you in 2022. Follow us on Facebook and Instagram at Down Syndrome with a Slice of Autism!

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

Posted on by Teresa Unnerstall

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

Blog #237~Autism Acceptance Month

Posted on by Teresa Unnerstall

Blog #237~Autism Acceptance Month

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

Rainbow Infinity Sign represents neurodiversity

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

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

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

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

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

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

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

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

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

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

That’s what is in my noggin this week.

~Teresa 🙂

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