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 Augmentative and Alternative Communication (AAC), Autism, Down syndrome, Speech and Occupational Therapy

Blog #123~UFC Rousey & Apraxia of Speech

Blog #123~UFC Rousey & Apraxia of Speech

Headline in ABC News last week, Ronda Rousey UFC champion fighter brings awareness to Apraxia of Speech! Take a look at the story featured on Good Morning America:

The lives of champion UFC fighter Ronda Rousey and speech pathologist and mom Laura Smith might seem worlds apart, but the two women share a unique connection.

Smith and her 5-year-old daughter, Ashlynn, met Rousey, 28, this spring at a book signing in Denver, Colorado, for Rousey’s autobiography, “My Fight/Your Fight.”

Smith told ABC News she was on a mission to meet Rousey in order to find out if the speech disorder she had as a child was the same condition that affected her daughter, Ashlynn, has.  

“I read probably everything she’s ever said about her speech impediment and the more I read I was like, ‘That was apraxia. This is apraxia,’” Smith recalled.

Childhood apraxia of speech is a motor speech disorder where the brain has problems coordinating with the body parts –- like lips, jaw and tongue -– needed for speech, according to the American Speech-Language Hearing Association.

“At first I was tested for deafness,” Rousey said of her own childhood struggle. “They thought maybe my pronunciation was off because I was hearing things differently.”  

“But it was really I had all these words perfectly arranged in my head, it’s just when they tried to come out of my mouth they sounded different,” she said. “It was kind of like there was a divide between my brain and my mouth.”  

Because apraxia was not a common diagnosis when Rousey was a child, no one suspected it was what was behind the fighter’s speech problems. That is, until Smith gave Rousey a brochure on apraxia at the book signing.  

“I threw the brochure and the bodyguards came in immediately to get it,” Smith said. “She [Rousey] picked it up and I was like, ‘If you did have it, would you say it in your interviews because it would mean so much for our kids.’”

Rousey says the information in the brochure struck her instantly.  

“I actually ended up reading through the whole thing that night and was like, ‘Oh my God, this is all exactly it. This is exactly what it was,’” Rousey said. “I didn’t know it was actually apraxia until that moment.”  

“She really taught me a lot about myself that day and I can’t thank her enough for it,” Rousey said of Smith.  

To thank Smith and her daughter, Rousey sent a special message, doing exactly what Smith asked her to do at the book signing, talking about apraxia.

“Hi Laura and Ashlynn,” Rousey said in the taped message. “I just wanted to say I’m so happy to hear everything that you’re doing to raise awareness of apraxia.”

“You definitely raised awareness in me and I just wish you all the best,” she said. “I know our paths will cross again someday at some point so I can’t wait to see you again.”

Ronda Rousey ABC news

So just what does apraxia look like?   The American Speech–Language–Hearing Association, describes childhood apraxia of speech (CAS) “is a motor speech disorder. Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The messages from the brain to the mouth are disrupted, and the person cannot move his or her lips or tongue to the right place to say sounds correctly, even though the muscles are not weak.”

This hits home for me. My son Nick who is 21 years old and has Down syndrome and autism was given the diagnosis of apraxia when he was 6 years old. While his language skills have improved with speech therapy, he still struggles with articulating words. When he tries to imitate some words he gets stuck.  Nick continues to go to speech therapy, uses sign language, a picture exchange communication system (PECS) and has an AAC device with an app called Touch Chat to further facilitate his communication.

For more information including symptoms, causes, testing and treatment click on the on these links:

http://www.webmd.com/brain/apraxia-symptoms-causes-tests-treatments?page=3

http://www.apraxia-kids.org/

http://www.speakingofapraxia.com/  The first ever parent guide to childhood apraxia of speech, written by Leslie Lindsay

SOA_mock (2)

The meeting of Smith and Rousey at the book signing resulted in raising awareness of apraxia. Rousey posted the brochure on her Facebook page, which has been liked by nearly 7 million as of last week.

ronda-rousey-book

Here’s to Rousey who has won many fights in her life both in and outside the ring.  She has no doubt given inspiration to kids and their parents around the world. I hope this information helps parents and children who are struggling with speech difficulties. That’s what’s in my noggin this week.

~Teresa 🙂

Posted in Augmentative and Alternative Communication (AAC), Autism, Down syndrome, Education and Special Needs

Blog #115~SETT to Talk

Blog #115~SETT to Talk  

For the past few weeks, I’ve been writing about the SETT meeting process.  Recently, we did a SETT meeting at Nick’s school to re-evaluate the device he uses to communicate. This is called an Augmentative and Alternative Communication device (AAC). Nick is 21 years old and has Down syndrome and autism.

SETT is an acronym for Student, Environment, Task and Tools. The team gathered to ask key questions and get information that will help to pinpoint what technologies would best suit the student.

S= Student (abilities, learning styles, concerns)

E= Environment (What places will the talker be used and how)

T=Tasks (What type of work and learning will the student be doing?)

T=Tools (What tools are needed on the device to make it a success for Nick?)

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In Blog #114, I covered Nick’s abilities, learning style, needs and concerns.  The last three areas we brainstormed on were the Nick’s environment, tasks that we wanted Nick to be able to do on the talker and what tools would be needed to make this a success. Take a look at what the team came up with in these areas: 

Environment: 

* Uses a “change” visual

* PECS book at home – items to request, pictures of people, task strips

* Private SLP services – 1:1 for speech and occupational therapy

* Video modeling strategy successful

* Attends ESY (Extended School Year-summer school)

* Bowling, mall, library, out to lunch

* Church

* Job: delivery run to CEC for STEPS

* Shopping at Meijer and Wal-Mart

* Goes to movies, lunch/breakfast, and the park

*Has a respite worker at home

* Production class: shredding, sorting, bagging, cleaning

*Visits to family – grandparents, aunt and uncle

*Older brother, Hank, attends NIU

*Cooking

* Functional reading and math

* Yoga

* Dance party Fridays

* Uses classroom leisure choice board independently

* Small group or 1:1 instruction, especially for unfamiliar tasks

* Adult supervision for safety

* Visual supports

* Cues to stay on task for jobs he knows

* Needs to know expectations, both visually and auditorally- what to do, how many to   do, how many are left

* Does visual schedule for the day

* Benefits from hand‐over‐hand and modeling for fine motor tasks

* Looks for peer models

* Task strip for hygiene routines, with point  prompts, at home

* Visual learner

* Flexible with symbol sets – familiar with PCS, SymbolStix, Proloquo2Go

* 15 buttons on current AAC home page

* Uses visual support to order at restaurants instead of his AAC device

Picture14

Tasks: 

*“That’s gross”

* “I like that”, “I don’t like that”

* “That’s crazy”

* Flirting

* Gain attention

*Need help

* “Stop”

* “I need a break”

* Emotions

* Preferred items and activities

* Requesting

* Sharing his humor

* Order at restaurants

* Communicate what’s bothering him

* Sensory vocabulary – “hot”, “loud”, “crowded”

* “Where is the fire alarm?”

* “I’m tired”

* “I’m mad”

* Ask questions

* Share personal information

*Basic needs – bathroom, drink/thirsty, hungry

* Greetings

* Age‐appropriate vocabulary

* Comments

* Weather and calendar vocabulary

* Names – People past and present

The team looked at what tools would be needed on the device that would work for Nick.  Each member could choose the top three most important aspects to focus on in particular (these have 3 *** by them):

IMG_4318

Tools:

* Portable

* Shoulder or waist strap

* Durable

* Waterproof

* Loud enough for all environments

* Ability to add vocabulary

* Combination of single words and phrases***

* Import photographs

* Easy to program

* Ability to program on the fly

* 7‐8” screen size

* Sturdy case (“bounceproof”)****

* Quick and consistent response from AAC device***

* Category‐based******

* 2‐3 hits to communicate message**

* Online tech support

*Cloud or USB backup

* Warranty

* Cost

*Dedicated communication device

* Ability to hide buttons

* 8‐12 buttons per page

* Keyboard‐sized buttons or larger

*Long battery life

* 1 charger for whole system

* No replacing batteries

The SETT process was enlightening.  The team covered a lot of ground in looking at many aspects of communication for Nick.   As you can see, there are so many things to consider when looking into a voice output device.  Nick just got his new AAC device last Thursday.  I can’t wait to share with you how he is navigating it!  That’s what is in my noggin this week!

~Teresa 🙂

 

Posted in Autism, Down syndrome, Fun Side of Nick

Blog #11~The Good Ole Summertime

 The Good Ole Summer Time

Driving home from Dominick’s grocery store the other day I saw a group of enthusiastic kids jumping up and down on the sidewalk in front of their lemonade stand.  It took me back in time.  I recall the makeshift cardboard lemonade stands of past and thinking we could make a fortune.  In reality we barely made enough to buy a handful of Pixie Sticks at the local Stop & Go.  Years later, Hank and my niece Courtney crafted their own while we lived outside the East Bay area of San Francisco.  Our house was located at the very edge of a dead end street.  I think they might have sold enough cups to buy a few Pokémon cards.

Hank and his cousin, Courtney in California….Lemonade anyone?

Funny how such a visual can instantly take you back.  Oh…. the good ole summer time.  I have fond memories with my older brother Tom and younger sister, Laura.  We grew up a couple of blocks from Galveston Bay in Texas.  The Houston Yacht Club (HYC) was our playground.  We called ourselves “The Three Investigators.” We spent hours there swimming, climbing over the rocks on the jetty that served as the bulkhead around the harbor and sailing the Sunfish during the week.   Friday evenings were my favorite before a race regatta weekend. Dad would haul the Ensign out and scrub the bottom of the hull while we went swimming. Mom packed the rattan picnic basket filled with homemade crispy, golden fried chicken.

The igloo cooler (with Dad’s signature marker initials “TAR”) would be chilling Mom’s potato salad the absolute best along with a sundry of Shasta soda pops.  Mom would take us to Kroger and we would each pick out our favorite flavors (10 cans for one dollar!) Strawberry and black cherry were my favorite flavors.  Laura would always choose grape and the cola while Tom always picked the odd flavors like root beer and cream soda.

Our summers by the bay:

Dad getting the boat in ship shape for race day

Mini me in 1968, with my sibs in the background…. 

Looking back, I am not sure if anything stands out in Nick’s mind. But he does like looking at photographs from the past. Nick has Down syndrome and autism.  This week, I wanted to share a slice of our summer activities over the years.  Here is a photo tour of our summer fun:

Sandbox fun in Texas…..

Pool time… Nick messing with his brother, Hank…

Cooling off on the deck..

At Monterey a great coastline…..Yes it’s summer but it can be chilly in Northern California….

Tailgating at Sox Game…

Riding the train into Chicago with Uncle Tom….”Yay, double thumbs up!”

Our boys also got a chance to spend time down at HYC.  It was nice to share my childhood playground with the both of them.  Here is Nick with Paw Paw (my Dad)……

Nick behind the ships wheel, no worries we were dockside here. 

Hank and his cousin, Sam taking in Half Moon Bay in  California

Hank flying a kite at Hilton Head Island with his Dad and Grandpa Jim.  Nick’s playing in the sand to the right….. 

Most recently, we have been going to a new spot. An island strip called the Outer Banks (OBX) located in North Carolina.  We rent a house in the town called, Duck.  There is a peacefulness and charm to this area and the Duck Fire Department is very accomadating.

Siren testing, Nick is loving it…..

We get together with Ron and Ali, (Nick’s aunt and uncle) along with their kids Anna and Sam.  At OBX we are on beach time, very chill.  We turn the knob to “Bob” our favorite radio station and let the music take us back in time while the waves wash away all worries.

Hank, Sam and Nick chilling on the beach in OBX….

Pool time at OBX….. Nick says, Life is good!

Hope you enjoyed a slice of the good ole summertime.  That’s what’s in my noggin this week.  Time to slather on the sunscreen, blow up the beach balls, spit some watermelon seeds and enjoy the fireflies dancing in the evening sky…..  Looking forward to visiting a new coastline in Oregon for a family reunion and another trip to the OBX! Until next Monday, I hope your summer memories are  sunny, warm and relaxing.

Cheers!

~Teresa