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

Blog #245~DS-ASD Update

Blog #245~DS-ASD Update

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

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

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

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

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

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

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

Nick unloading the dishwasher
Working at home

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

Fun at the Park
Lunch date with personal support worker

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

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

~Teresa

Follow us on Facebook and Instagram at Down Syndrome with a Slice of Autism
Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Education and Special Needs, IEP (Indivdualized Education Plan)

Blog #239~ Back to School Tips for DS-ASD Families in 2021

Blog #239~Back to School Tips for DS-ASD Families in 2021

As the 2021-2022 School year approaches after a lengthy Covid-19 lockdown, many families feel anxiety about returning to school. Families who have a child with a dual diagnosis of Down syndrome and autism (DS-ASD) have additional challenges and needs to consider.

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 27 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

This week, I want to offer some practical tips to help families ease back to school. Whether you are in person or remote, the goal should be a smooth transition for students.

Here are my 10 Back to School Tips:

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

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 several times before school starts.

3. At the tour, whether it’s in person or virtual, ask the teacher to show you the Covid-19 safety precautions, accommodations and equipment that is listed in the IEP to make sure everything is in place.

First Then Visuals

Nick using the Smart Board

4. Prepare a student “About Me” profile sheet. There are many templates available online. You can include different sections such as, Things I love, My Strengths, What Works Best for Me, How to best support me, What Doesn’t Work for Me, 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.

Daily Report Sheet

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

7. If the student has a behavior support plan, 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 may need to be addressed.

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 due to summer break and remote learning due to the Covid-19 Pandemic. 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 for students in your school?
Time Timer App
Choice Boards

10. Show your commitment by staying on top of your child’s progress. Ask for data within the first 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, invested and aware of your child’s needs will help them reach their full potential for the new school year. As students re-enter school after a long break, let’s also remember to extend each other some grace, be flexible, and give time and space to establish the new normal, whether you are heading back into the classroom or working remotely.

That’s what is in my noggin this week.

~Teresa 🙂

Follow us on Social Media: Facebook, Instagram and Twitter

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, Down syndrome, Dual Diagnosis Down syndrome and autism

MLK Day and Finding the Light in 2021

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

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

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

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

~Teresa 🙂

Follow us:

Instagram and Facebook @Down syndrome with a slice of autism

Twitter @tjunnerstall

Posted in Augmentative and Alternative Communication (AAC), Autism, Behavior/ ABA, Dual Diagnosis Down syndrome and autism

Blog #155~More Than Down Syndrome,DS-ASD

Blog #155~More Than Down Syndrome, DS-ASD

My son, Nick has Down syndrome. There came a point when I felt like we didn’t fit in with the Down syndrome support groups. We stopped going to the local support group holiday parties, play groups and other fundraising events. My son, Nick lacked speech and displayed unusual and repetitive behaviors. These stimming behaviors included tapping, shaking and throwing objects. Vocal stimming and yelling was another behavior that he exhibited. His speech delays and inability to communicate, resulted in frustration on his part, which led to behavior problems and meltdowns. It became apparent that this was more than just Down syndrome, when he hit puberty.

photo-26

We approached the elementary school IEP team about these outbursts, where he would throw things, trash the classroom along with pinching and scratching staff. It didn’t seem like any of us, could get a handle these problems both in school or at home. The school IEP team was reluctant about getting an autism evaluation done, as they stated; “We have a primary diagnosis of Down syndrome we can work from”. Rather than push the matter with the school, we chose to have an independent evaluation done and paid for it (with some help from our private insurance), out-of-pocket.

It was money well spent. Nick got the new diagnosis of Down syndrome and autism (DS-ASD). If you suspect that your child’s behaviors might be related to more than just Down syndrome, I would strongly suggest that you get a referral from your primary care physician to get an evaluation for autism.

The diagnosis of autism, was like getting the magic key, that unlocked the door to more services for our son...….

magic key

Here are the additional services we received with the secondary diagnosis of autism for our son Nick who also has Down syndrome. Obtaining these services took some time, but the effort to get them, has been well worth it. These services were provided in part, by the school district and outside agencies:

*Behavior Support was requested from the school district, A BCBA certified autism specialist did a Functional Behavior Assessment (FBA). This lead to the development of a Behavior Support Plan (BSP), specifically targeting all triggers, and how to prevent & handle crisis situations during meltdowns. BSP’s can also target skill development in a variety of areas like toilet training which is very challenging. After the BSP was put into the IEP, we collaborated as a team. We built in specific visual supports and sensory breaks into his day, which helped him to stay focused and regulated.

*Speech Support and training on how to properly implement a Picture Exchange System (PECS), along with an Alternative Augmentative Communication (AAC) device.

ipad touch chat.JPG         photo (123)

*Toilet Training and workshops for home support  This included coaching on how to develop and implement a timed toileting schedule and use visual supports to promote independent living skills inside the home.

*Additional State Funding (In-Home Family Support Child Based Waiver)  This is funding for respite care, behavior support and safety/ health equipment to support the child at home.

*Federal Funding (Supplemental Security Income-SSI)  A federal  income supplement program funded by general tax revenues (not Social Security taxes). It is designed to help aged, blind, and disabled people, who have little or no income; and it provides cash to meet basic needs for food, clothing, and shelter.

Getting the secondary diagnosis label of Down syndrome and autism (DS/ASD), helped the school staff, therapists, medical professionals, family and friends get a better understanding of Nick’s behaviors and additional needs. By getting access to these additional supports, we’ve been able to change the strategies needed to help Nick. It’s important to note that with co-occurring DS-ASD, the autism symptoms often supersede over those related to Down syndrome. Behaviors and additional needs associated with DS-ASD are complex.

DS-ASD Ribbon

As a result of obtaining these supports, Nick’s communication improved, allowing him to feel understood, respected and less frustrated. As a family, we felt better assisted with the training provided from the BCBA and our local autism center. Applying for the state waiver and securing the funding for respite staff took some of the burden off us.

If you suspect your child with Down syndrome may have autism, read this link by the National Down Syndrome Society for the signs and symptoms: https://www.ndss.org/resources/dual-diagnosis-syndrome-autism/

Additional resources for navigating a dual diagnosis of Down syndrome and autism:

*When Down Syndrome and Autism Intersect-A Guide to DS/ASD for Parents and Professionals and Supporting Positive Behavior in Children and Teens with Down Syndrome books:

down-syndrome-and-autism-intersect

Book Supporting Positive Behavior DS

*The Kennedy Krieger Institute- https://www.kennedykrieger.org

*Down Syndrome Association (UK)- http://www.downs-syndrome.org.uk/for-families-and-careres/dual-diagnosis/

*National Association for Down Syndrome (NADS)http://www.nads.org/resources/down-syndrome-and-autism/

*Facebook Support Groups:

-Down Syndrome With A Slice Of Autism

-Autism Discussion Page (Bill Nason)

-The Down Syndrome-Autism Connection http://www.ds-asd-connection.org

The challenges of having a child with co-occurring Down syndrome and autism (DS-ASD) are unique. So many parents say that they no longer fit in with the Down syndrome support groups and can’t relate to the autism groups either; they feel isolated. You as the parent, know your child best.  If you suspect that your child with Down syndrome may have symptoms associated with autism, I strongly suggest that you take action to get a clinical, medical evaluation. The autism label doesn’t change who your child is as a person, it gives you a better understanding how to meet the child at their own level.

That’s what is in my noggin this week 🙂

~Teresa

Follow Nick:

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

Twitter @tjunnerstall