Posted in Autism, Autism Spectrum Disorder (ASD), Down syndrome, Dual Diagnosis Down syndrome and autism, Parenting Special Needs, Resources for Special Needs

Exclusive Author Interview- A New Course: A Mother’s Journey Navigating Down Syndrome and Autism

Exclusive Author Interview- A New Course: A Mother’s Journey Navigating Down Syndrome and Autism

A New Course Book Cover multiple books

My book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism”  will launch next week on May 5, 2020! Pre-order your copy now on Amazon—  https://amzn.to/2W3Un6X My mission as an author and dual diagnosis consultant– is to make this journey smoother for families navigating a dual diagnosis of Down syndrome and autism (DS-ASD).

This week, an exclusive interview I did with Leslie Lindsay, the award-winning author of SPEAKING OF APRAXIA (Woodbine House, 2012). Leslie has been awarded as one of the top 1% reviewers on GoodReads and recognized by Jane Friedman as one of the most influential book reviewers. Since 2013, Leslie has interviewed over 700 bestselling and debut authors on her author interview series. Follow her bookstagram posts @leslielindsay1. More about Leslie following interview below.

Check out this exclusive interview and get the behind the scenes scoop about my book, A New Course: A Mother’s Journey Navigating Down Syndrome and Autism:

https://leslielindsay.com/2020/04/27/wife-mother-and-advocate-teresa-unnerstall-dives-in-head-first-with-her-all-hands-on-deck-approach-to-navigating-an-autism-downs-syndrome-diagnosis-in-her-new-book-a-new-course/

Leslie Lindsay Book Picture

Artistic photo of book cover designed and photographed by Leslie Lindsay. Join her on Instagram @leslielindsay1 #alwayswithabook for more like this.

Thank you to Leslie Lindsay for a great interview and all your support! 🙂 Next week, I’ll post the virtual book launch activities here on the blog and social media sites listed below. Join A New Course Book Launch page on Facebook to get the latests updates in real time!

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

~Teresa

Follow on Social Media:

Facebook, Instagram and Pinterest @Down Syndrome with a Slice of Autism

Twitter @tjunnerstall

 

 

 

 

 


 

Posted in Autism, Autism Spectrum Disorder (ASD), Behavior/ ABA, Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism, IEP (Indivdualized Education Plan)

Blog #226~Beyond Down Syndrome: A New Course

Blog #226~Beyond Down Syndrome: A New Course

World Down Syndrome Day is coming up on March 21st. This day 3/21 was chosen to represent Trisomy 21, where there are 3 copies of the 21st chromosome. WDSD highlights the importance of promoting awareness, understanding, inclusion and acceptance for individuals with Down syndrome. Next week, I will provide concrete ways that you can help promote WDSD.

But what if there is more beyond Down syndrome that families are facing? Did you know that approximately 18% of children with Down syndrome have a secondary diagnosis of autism? This dual diagnosis of Down syndrome and autism (DS-ASD), presents additional challenges with communication impairment that can lead to behavior problems.

Here are some of the signs and symptoms from the National Down Syndrome Society (NDSS) of a dual diagnosis of DS-ASD:

https://www.ndss.org/resources/dual-diagnosis-syndrome-autism/

My son Nick, is 26 years old and has a dual diagnosis of DS-ASD. Ten years ago, I started writing about my journey and this new course our lives took, when Nick got a secondary diagnosis of autism. I felt very alone. I found myself pulling away from our local Down syndrome support group activities, because my son no longer fit in. He did not engage like his peers with Down syndrome. His repetitive movements (rocking, hand flapping, unusual play with toys) and vocal humming sounds made him stand out from the crowd. This new course was different than the one I planned. Nick was very delayed in toilet training and his speech deficits lead to behavior problems. As he approached puberty, his lack of speech and understanding what was expected, led Nick to become very frustrated. My son had no voice and his actions led to dangerous meltdowns.

What I soon learned (when Nick was 10 years old), is that I dealing with way more beyond Down syndrome. There was no way that I could navigate this course alone. Once I sought guidance from experts, we were able to give Nick a voice using a picture exchange system (PECS). Together with the IEP team, we determined what behaviors to target and developed a positive behavior support plan (BSP). The two key components that helped Nick was giving him a voice and finding the triggers that were causing behavior problems. We sought help from the school district’s autism specialist. The IEP team then, put supports in place and we all received training to help support the secondary diagnosis of autism. It is critical to identify target behaviors, and make a game plan to support a child before they escalate to a boiling point and have a meltdown. It’s imperative to write in additional supports to address communication including visuals  into the IEP. A reoccurring theme in my blogs is the need to address speech and behavior collectively, as all behavior is a form of communication. Visuals are key for communication, but also for navigating daily life in the form of picture schedules, social stories and learning tasks. These visuals are the blueprint for your child to understand what is going on and what you are expecting from them, and in turn helps to reduce anxiety levels.

My mission for the past ten years has been to make this DS-ASD journey easier for families following a similar path, and to open the eyes for other’s to understand the complexities and challenges associated with DS-ASD. This path that I’ve been on with Nick has not been easy. Early Intervention after birth and over the years, was critical to helping Nick reach developmental milestones. Our family has weathered a lot of storms, but with each– the sun came back out and we learned a lot along the way. Now, I am ready to share my journey with you!

 I am pleased to announce my book and the journey beyond Down syndrome:

TU_5-5x8-5_WPS_ebook

A New Course: A Mother’s Journey Navigating Down Syndrome and Autism launches May 5, 2020 and takes a deep dive into the complexities of what many families face raising a child with a dual diagnosis of DS-ASD. None of us can escape life without challenges. We each have our own journeys and individuals with DS-ASD are unique and may not be as severe as what we experienced with Nick. Our struggles at times were unsurmountable. But if you are an avid reader of my blog– you know that I’ve guided you down a path and showed you how Nick has become the best version of himself given a dual diagnosis of DS-ASD. Each chapter concludes with a 3:2:1 (3 Lessons I learned, 2 takeaways to use in the future and 1 question or concern I had during that particular time). At the end of the book, I’ve included my version of an appendix, with the final lessons I’ve learned on this journey. These final lessons are taken from my blog entries, that I’ve been writing since 2012.  A New Course is available for pre-order now on Amazon!

My passion is helping other families navigate this new course beyond Down syndrome. As a DS-ASD consultant, I am determined to assist families to find resources, offer support and guidance to make their journeys smoother. I hope my story opens the reader’s eyes and starts a conversation of what it is like to raise a child with the unique challenges associated with DS-ASD. In doing so, perhaps the reader might gain better understanding, awareness and compassion for families dealing with DS-ASD and other complex special needs.

That’s what is in my noggin this week.

~Teresa 🙂

LOGO TRANSPARENCY (5)

Follow on Social Media:

Facebook, Instagram and Pinterest @Down Syndrome With a Slice of Autism

Join us on our new Facebook Page: A New Course Book Launch to get the more inside the scenes and exclusive tidbits about A New Course: A Mother’s Journey Navigating Down Syndrome and Autism.

Twitter @tjunnerstall

Posted in Adult Day Programs for Special Needs, Autism, Autism Spectrum Disorder (ASD), Dual Diagnosis Down syndrome and autism

Autism Awareness Month: Final Thoughts

Autism Awareness Month: Final Thoughts

autism awareness 2016

April is Autism Awareness Month, and I’ve written all month how awareness is not enough. Individuals with autism and their families need understanding, acceptance and inclusion in society. Individuals on the autism spectrum (ASD) need various levels of support to become as independent as possible. This type of support can’t be provided without funding.

Here’s a sobering fact- “In the documentary, Autism: Coming of age it is reported that in the next 10 to 15 years, an estimated 800,000 children with autism will age out of the school system and transition into adulthood. Then, they will look to ill-prepared state and federal governments for the support services and resources to meet their many needs — a situation autism experts refer to as the “coming tsunami.

tsunami

Slapping an autism awareness ribbon on a car, isn’t enough anymore. Individuals with autism need various levels of support, and a person centered planning (PCP) to prepare for adult life.

person centered planning

“Wikipedia defines person-centered planning (PCP) as a set of approaches designed to assist an individual to plan their life and supports. It is most often used for life planning with people with learning and developmental disabilities, though recently it has been advocated as a method of planning personalized support with many other sections of society who find themselves disempowered by traditional methods of service delivery, including children, people with physical disabilities, people with mental health issues and older people. PCP is accepted as evidence based practice in many countries throughout the world.”

Person Centered Planning (PCP) is individualized. It can help identify opportunities for employment, community participation/enrichment activities and living arrangements for adult life.  PCP can be done with the school IEP team, to prepare the student for a bright future based on their strengths and needs.

Autism is not going anywhere, the wave is coming in hard. There is a staggering amount of families on waiting lists for state funding who are aging out of the school system. My son Nick is 25 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). He required a high level of support. Currently, Nick attends an adult developmental training program that is covered by funds through a state waiver. All across the country thousands of families are on long waiting lists, to seek such funds to support their child with autism and other intellectual and developmental disabilities. The conversation to advocate for individuals with autism must continue well past April before that tsunami wave hits the shore!

That’s what is in my noggin this week.

~Teresa

Follow Nick on Social Media:
Facebook and Pinterest @Down Syndrome With A Slice Of Autism Check 4/27 Facebook post to watch the documentary, Autism: Coming of Age
Instagram @nickdsautism
Twitter @tjunnerstall

 

 

 

 

 

 

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

100 Facts About Autism

100 Facts About Autism

autism did you know

April is Autism Awareness Month, but it’s much more than promoting awareness. Individuals with autism, their caregivers, and advocates want to encourage better understanding, inclusion and acceptance of autism spectrum disorder (ASD).

Here is a quick and easy read of 100 facts about autism, that you can finish in less than 10 minutes:

https://nickspecialneeds.com/2018/04/23/blog-203-100-facts-about-autism/

When we have a better understanding about autism, we can help to promote acceptance and inclusion for individuals with ASD. Much can be gained in our society when we begin to accept people for who they are, and understand and embrace their differences.

That’s what is in my noggin this week.

~Teresa 🙂

Follow my son Nick (dual diagnosis of Down syndrome and autism, DS-ASD):

Facebook and Pinterest @Down Syndrome With A Slice Of Autism
Instagram #nickdsautism
Twitter @tjunnerstall

 

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

Autism Awareness Month,5 Ways You Can Help

Autism Awareness Month, 5 Ways You Can Help

autism awareness 2016

April is Autism Awareness Month, but it’s much more than promoting awareness.  Individuals with autism, their caregivers, and advocates want to encourage better understanding, inclusion and acceptance of autism spectrum disorder (ASD).

Here are 5 easy ways you can help promote awareness, understanding, inclusion and acceptance for individuals with autism:

https://nickspecialneeds.com/tag/autism-5-ways-you-can-help/

Each of us can do our part to help individuals with autism feel more welcomed in their communities. Much can be gained in our society, when we begin to accept people for who they are, and understand and embrace their differences.

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

~Teresa

Follow my son Nick (dual diagnosis of Down syndrome and autism,DS-ASD):

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

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

World Autism Day-April 2nd

World Autism Day- April 2nd

World-Autism-Awareness-Day_ss_323229098

On April 2nd, World Autism Awareness Day, we celebrate and recognize individuals on the autism spectrum, and promote fundraising and researching initiatives. In addition, this day is about promoting awareness and inclusivity for people with autism across the globe.

April is National Autism Awareness Month to promote autism awareness, understanding, acceptance and inclusion, drawing attention to the tens of thousands facing an autism diagnosis each year.

Click here to read more about World Autism Awareness Day and National Autism Awareness Month: 

https://nickspecialneeds.com/2018/04/02/world-autism-awareness-day/

World Autism Awareness Day and National Autism Awareness Month is a great time to advocate for understanding, acceptance and inclusion, it’s essential to advocate for children, and adults, with autism year-round.

That’s what is in my noggin this week.

~Teresa 🙂

Follow my son Nick (DS-ASD):

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

Posted in Autism, Autism Spectrum Disorder (ASD), Down syndrome, Dual Diagnosis Down syndrome and autism, Recreation/Leisure and Special Needs

Blog #225~10 Autism Holiday Stress Tips

Blog #225~10 Autism Holiday Stress Tips

Let’s face it, holidays are stressful.  Navigating the Christmas season with a child who has autism is even more demanding on families.  My son, Nick is 24 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD).  We’ve had our share of challenges, as do many families who care for an individual with special needs. Here are 10 ways to ease holiday stress and manage the upcoming weeks of festivities.

Keep Calm Christmas

10 Autism Holiday Stress Tips:

1.Start early, get as much done ahead of time with holiday preparations.

2. Pare down where you can, whether it’s decorations, presents, or parties. It’s okay to say no or bow out early.  Flexibility is key!

3. Don’t rush, allow enough time to get from point A to point B. Give more notice when it is time to transition. This will help to avoid meltdowns.

4. When possible, try to stick to routines.

5. Avoid surprises, prepare your child ahead of time.  Make social stories using visuals or written words (depending on your child’s level of comprehension). This will act as a script for your child to follow. If they can see what’s expected, they will understand the plan and lessen anxiety levels.

IMG_3865

6. Provide pictures of family members and friends that you don’t see that often prior to visiting them.  Notify family and friends of sensitivities and sensory behaviors your child may exhibit. Nick makes vocal stim sounds and taps objects which helps him to self-regulate. Some individuals with autism do not like hugs or fail to make eye contact. Family members might engage instead with a special handshake, high- five or Nick’s favorite, the elbow bump 🙂

Nick and jenna elbow bump

7. When traveling or lodging outside your home, pack comfort items like toys, music, movies, electronic devices and snacks. Have these readily available.

8. Give your child opportunities to help out. Heavy work activities provide sensory input that is calming. Here are a few Nick enjoys…..

 

9. Know your child’s limits.  There is so much sensory overload this time of year with excessive crowds, noises, lights and cramming too much into a day. This can be very overwhelming. So, watch for signs of distress (Nick will pinch his own cheeks, yell and say I’m mad). Redirect with a break icon, and seek out a quiet spot before activities begin.  It may be necessary bailout here before behaviors escalate, to avoid a meltdown.

10. Allow for down time, to kick your feet up and relax. Weighted blankets are great for deep pressure that can help to calm the sensory system. I recently found out these blankets are available at Target.  Hmmmmm……that sounds like a good excuse to go to Target. 🙂

Disruption in routines, schedules, and stimulating environments make for a holiday filled with fraught for individuals with autism and other special needs.  But preparing your child and having a bailout plan, will help keep the stress levels down, making the Christmas season more merry and bright.  How do you to keep calm this time of year?  Please share your secrets to surviving the holidays in the comments!

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

~Teresa 

Follow Nick:

017

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

 

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

Blog #215~DS-ASD Independent Work Activity Ideas

Blog #215 DS-ASD Independent Work Activity Ideas

Task bins and binders are a great way to teach academic, vocational and independent living skills.  The sky is the limit when creating activities to develop fine motor skills, letter, number and object recognition, sorting, assembly and sequencing.  My son Nick is 24 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD).  I’ve created many TEEACH (Treatment and Education of Autistic and Communication Handicapped Children) inspired activities for my son.  The TEEACH method is a structured learning environment that is visual based to help cue a student to working independently.

When introducing task bins and binders, begin with one or two at a time.  Create a visual schedule that you can build upon that includes something to work for (a highly preferred reward).

First-Then Visual:

first then work

Once your child or student is successful with the First-Then schedule, begin to increase the time on task and introduce new task bins and binder activities.

Expanded Work Schedule:

working for chart

So, what type of work activities should you include for your child or student?  My first suggestion is to look at their strengths and build around those.  My son, Nick is good at sorting and sequencing.  Over the years in his IEP’s (Individual Education Plan), we have built goals and jobs around this strength.  Secondly, pick activities that the child or student can do with success and minimal prompts.  This will help them stay motivated and be less frustrated.  Finally, once skills are mastered independently, begin to add in new tasks one at a time.  The new tasks should always be paired with the mastered skills, to encourage confidence and minimize frustration.  Note that point prompting and hand-over-hand may be necessary to assist them in the new task.

Examples of Fine Motor Skill Development Activities:

Wooden Beads on a String making a Colorful Toy Necklace                                  Fine motor stringing Nick

fine motor animals             fine motor clips

Puzzles and Matching games can foster academic and speech development:

 

Be sure to include puzzles and activities that your child or student enjoys, whether it’s Thomas the Tank Engine or Disney’s movie Frozen; this will peak their interest in working. 🙂

These binder activities were made by a speech therapist, grouping like sounds together to work on articulation in addition to matching:

matching

Color matching binder activity:

matching pies

Teaching matching and pairing them with holidays and season changes binder activities: 

 

matching fall          matching weather

Teaching emotions matching binder activity:

(Does the child or student respond and understand better to actual photos or icons?  Build the activities around what works best for them)

emotions2             emotion icons

Assembling and sequencing activities can build skill development for future vocational work:

assembly shapes      assembly school supplies    assembly nuts and bolts     Nick packaging door knobs_Habitat_4 (2)

Silverware sorting and rolling could lead to a job in a resturaunt:

silverware sorting     silverware rolling

Currently, my son Nick is working for 30-45 minutes on task bins and binders.  Here’s how I’ve set it up at home:

Task Two Strip     bins 1 and 2     Bins 3 and 4     nick folding washcloths

Depending on how he is feeling, I gauge what to put in each work bin.  On this particular day, he was not moving as swiftly through the tasks; so I only put one in each bin.  However, there are other times when he flies through the work, so I’ll put in a several in each bin.  Bottom line, listen to your child or student, and look for cues if they seem tired or frustrated and ease off on the demands you are placing on them.

School support teachers/case managers, speech, occupational and ABA therapists are great resources to ask for ideas and materials.  There are plenty ideas on Pinterest.  Many of the materials can be bought at dollar or Five Below stores as well as garage sales and resale shops.

Task bins and binders help children, students and adults like my son, Nick to develop academic, vocational and independent living skills.  Be consistent in the delivery with visuals, task and rewards, introducing the work in small increments.  Alternate the activities with easier or personal interests, (EX/ Disney’s Frozen or Thomas the Tank engine puzzles and matching).  New activities and skills may require hand-over-hand assistance and point prompting.  If the child or student becomes distracted, or bored remind them what they are working for by pointing to the reward (which has been pre-selected).  During the work session, listen to signs and cues of distress or frustration.  Offer encouragement (good job, you got it, yay, uh oh-try again) and back off on the amount of work and time spent before behavior escalates to anger.  Choose activities that promote academic, future employment (whether it’s paid or volunteer work), and functional living skills.

Task bins and binder activities done both at home and school,  will help your child or student become confident, more independent and productive in society.  That’s what is in my noggin this week. 🙂

~Teresa 

Follow Nick on Social Media and view videos of Big Guy in action:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram @nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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

Blog #205~Post Mother’s Day Advice

Blog #205~Post Mother’s Day Advice

Being a mom can often result in feelings of guilt, and second-guessing decisions that you make for your children.  As a mother of a son with special needs, this is even more heightened.  Now, you see it on social media.  There are so many individuals with special needs, succeeding in new therapies, Special Olympics, and going to prom.  This creates added pressure to do even more for your child.  After 24 years of raising my son Nick, who has a dual diagnosis of Down syndrome and autism, I have gone through all these feelings of not doing enough.  This week, I ask that you STOP and take a breath Moms!

unplug it quote

After you stop and take that breather, you can re-boot and move forward, and re-evaluate what your child needs at this point in their lives.

*Are the current therapies and interventions effective?

*What other programs are available, that might be a better fit?

*What type of activities can be incorporated at home?

In the following blog, I outline how to re-evaluate current activities along with implementing effective TEACCH method ( Treatment and Education of Autistic and Communication which is an evidence-based service, training, and research program for individuals of all ages and skill levels with autism spectrum disorders).  The TEACCH method is a structured program that helps individuals with ASD to learn, function and reach their goals.  Incorporating TEACCH activities at home can be a time saver, instead of running around multiple times a week for ABA (Applied Behavioral Analysis) therapy.

Click here to view:  https://nickspecialneeds.com/2017/08/07/blog-180special-needs-momslet-go-of-the-guilt/

Nick doing TEACCH Method at home 🙂 (video version available on our social media sites listed below)…………..

nick folding washcloths

For more information about Applied Behavioral Analysis (ABA) TEACCH Method click here: https://www.appliedbehavioranalysisprograms.com/faq/what-is-the-teacch-method/

My advice post Mother’s Day, is to take a deep breath and re-evaluate current programs for your child.  Decide which are effective and relevant, at this time in their lives.  Are these therapies and interventions the most efficient use of time for your family?  Prioritize and determined what you can scale back on.  Consider implementing the TEACCH activities at home to save time.  These activities help to build new skill sets, confidence and independent living.  Finding the balance for your child with special needs along with your family is key.  It will also help you as the mom to feel less guilty, and more confident as a parent.

That’s what is in my noggin this week 🙂

~Teresa

Follow Nick on Social Media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

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

Blog #203~ 100 Facts About Autism

Blog #203~ 100 Facts About Autism

autism did you know

As Autism Awareness Month winds down, my goal is to share information that will lead to a better understanding and acceptance for persons having autism.  I found a great link with 100 facts about autism, from Action Behavior Center.  It is a quick and easy list you can read through, in less than 10 minutes.

100 FACTS ABOUT AUTISM–  http://www.actionbehavior.com/100-things-to-know-about-autism-spectrum-disorder-in-2018/

Better understanding about autism can help individuals like my son Nick, be accepted and appreciated in our society.  That’s what is in my noggin this week.

~Teresa

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall