Tag: Dual Diagnosis Down syndrome and 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 tjunnerstall

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 🙂

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

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

Posted on by tjunnerstall

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

As a parent, teacher and caregiver, how do you help a child reach their full potential and become as independent as possible? I am a parent of a 29 year old son who has a dual diagnosis of Down syndrome and autism (DS-ASD). I work daily with my son Nick, on how to be responsible and do things independently. This gives him a sense of accomplishment and belonging. Last week’s blog focused on how to teach skills and jobs you can introduce in the kitchen. Click here to view: https://wp.me/p2ke99-3aS

This week, I have a full list of jobs for the kitchen, laundry and around the main floor living area.

Home Management Skills:

  • Cleaning up toys, putting away in bin/basket
  • Sweeping/ mopping the floor
  • Vacuuming the floor
  • Dust furniture
  • Throwing away items in the trash
  • Taking out the trash
  • Empty out recyclables and can crushing
  • Taking garbage and recycle bins to the curb
  • Picking up the mail
  • Wiping off countertops and windows
  • Set the table
  • Assist with meal planning, food preparation and making choices of food and snacks
  • Washing dishes
  • Loading and unloading the dishwasher
  • Feed pets
  • Put dirty clothes in the hamper
  • Carry and load laundry into washer and dryer
  • Folding clothes
  • Put away clothes
  • Hang up coats
  • Making the bed
  • Bring in and put away groceries
  • Water plants

In last week’s blog I mentioned the that these jobs didn’t happen overnight. We have built on these for many years. I suggest you start small and use lots of praise and rewards. Over the years we have modeled the jobs ourselves, used visuals, and video modeling to teach these tasks. It can be very beneficial to work with a BCBA behaviorist who can help you target skills, by meeting the child where they are at, breaking down the task and using the hand over hand technique as well as point prompts to support the child.

These home management skills will help to build self-esteem, along with a sense of ownership and belonging. Building a skill set of independence will give your child housing options when they become an adult. The next blog will move into the bathroom and include some personal hygiene skills. We hope that you feel inspired as a parent, teacher or caregiver to help your child to reach their full potential.

That’s what is in my noggin this week.

~Teresa 🙂

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

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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 tjunnerstall

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 tjunnerstall

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 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

Posted on by tjunnerstall

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 Icon, Is 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 

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

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

Posted on by tjunnerstall

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”!

Wait Icon
Time Timer App

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

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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 tjunnerstall

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 tjunnerstall

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

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

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

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

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

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

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

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

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

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

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

~Teresa 🙂

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

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

Posted on by tjunnerstall

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 🙂

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

Blog #241~ DS-ASD in Praise of Caregivers

Posted on by tjunnerstall

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