Tag: National Association for Down Syndrome

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

DS-ASD, Nick’s Spring Update

Posted on by tjunnerstall

DS-ASD, Nick’s Spring Update

spring flowers

The trees and flowers are budding and blooming here in the Chicago area.  A long overdue, and highly anticipated spring has finally arrived.  Here is what my son, Nick has been up to this spring.  Nick is 24 years old and has a dual diagnosis of Down syndrome and autism.

Nick attends an adult day program which provides enrichment activities both in-house and out in the community.  The structured curriculum and schedule of this program serves Nick, and his fellow clients well.  Community trips to local parks, restaurants, shopping for the weekly cooking segment are integrated throughout the week.  They have also been doing gardening and working on craft projects that will be sold next week, at the Garden and Craft Sale.  Nick enjoys going to this program, and looks forward to going to it daily.

Outside of his adult day program, Nick likes to go to the movies, parks, library and out to eat with his personal support/respite caregivers.

It’s the middle of April and a jacket is still required……

nick swing neighborhood

Oh happy day 🙂

Nick taco bell outside

For the past couple of years, Nick and his respite caregiver Jodi, have joined up with Christopher and his caregiver for date night, each Thursday.  These two guys have a lot of laughs together at the library, and going out to eat afterwards.  His buddy is moving out-of-state, so it was a bittersweet final date night for the two of them…….

Nick and Christopher saying goodbye, it’s the end of an era…..

nick and christopher

March is Down Syndrome Awareness Month, and 3/21 also being World Down Syndrome Day.  Nick and I spent this month doing advocacy and awareness about Down syndrome.  One campaign we were a part of was with Noah’s Dad, #provethemwrong which highlights the many awesome things that people with Down syndrome are doing in the world.  To follow Noah’s Dad and #provethemwrong click here for more information: http://noahsdad.com/prove-them-wrong-tee-shirt/

Nick Prove Them Wrong

Our family also supports The National Association for Down Syndrome (NADS) which is based in Chicago.  We are sponsors for the annual NADS Bowl-a-thon fundraiser.  Nick had a blast at the event :)……

Nick NADS bowlathon

Over the past weekend, we made a trip to Ohio to celebrate Nick’s cousin’s graduation from Bowling Green State University.  Nick is highly social, and loves spending time with his cousins, aunt, uncle, and grandparents.  Before the early 9am graduation ceremony began, in the crowded Stroh Center, Nick did his part to test a fire alarm cover.  The loud buzzer blared for a few seconds, before his Dad could close it back down.  It was a close call, but at least he didn’t pull the actual fire alarm.  He’s cheetah fast, and as I’ve said before, it’s Nick’s world, the rest of us are just trying to keep up.

Congratulations and elbow bumps to Nick’s cousin, Sam, well done!…….

Nick and Sam Graduation

Relaxing on the deck and enjoying a warm, spring day with his cousin, Anna….

Nick and Anna

Spring is a time of renewal, and taking in the beauty of nature coming back to life after a cold, harsh winter.  It feels so good to get outside and power walk again.  These walks are a time for me, to reflect on life’s blessings.  I feel very fortunate that my son is healthy, happy and enjoys his life as a young adult having Down syndrome and autism.  Yes, there are many challenges, and he certainly keeps us all on our toes.  But the joy and humor that Nick exudes, far outweighs the behavior challenges we incur daily.

It’s almost Mother’s Day, which is the official “green light” to plant flowers and vegetables here in the Chicago area.  I’m ready to fill up the clay pots with some color, on the empty pallet of the deck.  I can’t wait to put the tomato plants into the soil.  Gardening is my way of relaxing, and shaking off daily stress.  It’s so important to carve out time for yourself, and restore what can sometimes be taken away, by the demands of parenting a child with special needs.  Wishing all the moms on the front lines, a very Happy Mother’s Day.   My hope is that you make time to enjoy something on your own, that is fulfilling and relaxing each day.  That’s what is in my noggin this week.

Happy Spring everyone 🙂

~Teresa 

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

 

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

Down Syndrome Awareness, Spread the Word!

Posted on by tjunnerstall

Down Syndrome Awareness, Spread the Word!

March is a significant month for raising awareness and acceptance for individuals with Down syndrome and other intellectual and developmental disabilities.  It is time that we as a society, do something to change the way people refer to individuals with special needs.  There are several campaigns and events this month, that I want to highlight!

spread the word 2018

“Spread the Word to End the Word is an ongoing effort to raise the consciousness of society about the dehumanizing and hurtful effects of the word “retard(ed)” and encourage people to pledge to stop using the R-word. The campaign is intended to get schools, communities and organizations to rally and pledge their support to help create communities of inclusion and acceptance for all people. Most people don’t think of this word as hate speech, but that’s exactly what it feels like to millions of people with intellectual and developmental disabilities, their families and friends. What started as a youth-led grassroots effort in 2009 by a small group of students with one simple call to action, has evolved to communities across the world not only taking the pledge, but challenging others to talk, think and write with respect.”

Click here and pledge to Spread the Word to End the Word:

https://www.r-word.org/r-word-take-action.aspx#.Wp1zqExFx2s

spread the word tee shirt

 

Be sure and mark your calendar for March 21st, World Down Syndrome Day!

World Down-Syndrome-Day

“World Down Syndrome Day creates a single global voice for advocating for the rights, inclusion and well-being of people with Down syndrome.  The mission is to promote awareness and understanding, seek international support, and to achieve dignity, equal rights and a better life for people with Down syndrome everywhere. The date for WDSD being the 21st day of the 3rd month, was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome.

Click here for more information about WDSD:

https://worlddownsyndromeday.org/about-wdsd

One of the trademarks of World Down Syndrome Day is rocking your fun, brightly colored, funky socks.  Last year I partnered with We Help Two for a fundraiser and awareness campaign.  Portions of the proceeds went to our local Down syndrome support group, the National Association for Down Syndrome (NADS) http://www.nads.org.  In addition, for every pair of socks sold, We Help Two gives a pair of thermal socks to donate to a local homeless shelter.

funky-socks

Last year, my son Nick and I raised over $500 for NADS and donated 59 pair of thermal socks to The Hessed House, a local homeless shelter.  The campaign was super easy to set up and promote on social media, with minimal time as the host.

Nick and I donating We Help Two thermal socks to the Hessed House……….

Nick and Mom at Hessed House 2

To order or host your own Rock your Funky Socks for WDSD click here:

http://www.wehelptwo.com/

Order socks to directly benefit NADS fundraiser click here: https://my.wehelptwo.com/campaign?id=795

Check out the brand new styles offered this year, by We Help Two :)………

 

 

One more campaign I want to showcase is led by Noah’s Dad, called #Prove Them Wrong. 

“It’s awesome to see so many people with special needs proving to the world that what it may think about them is wrong! We see so many of your children are doing awesome things as well! We want to invite you to be a part of a fun new campaign we’re doing called the #PROVETHEMWRONG campaign and show the world how your children are doing that! I’m going to be making a video for World Down Syndrome Day and I want you / your family in it!” -Noah’s Dad

prove-them-wrong-tee-shirt-noahs-dad-down-syndrome

For more information about #PROVETHEMWRONG click here:

https://provethemwrongshirts.com/

http://noahsdad.com

Our dream as a community of advocates for those living with intellectual and developmental disabilities, is to live in a world where everyone feels respected, loved accepted and appreciated.  Let’s get out there and spread the word this month and make a difference for the future!

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

World Down Syndrome Day~ Rock Your Socks

Posted on by tjunnerstall

funky-socks

World Down Syndrome Day~ Rock Your Socks

Mark your calendars for 3/21/17, that’s World Down Syndrome Day!

“World Down Syndrome Day is observed on March 21. On this day, people with Down syndrome and those who live and work with them throughout the world organize and participate in activities and events to raise public awareness and create a single global voice for advocating for the rights, inclusion and well-being of people with Down syndrome.”

world-down-syndrome-day

One of the trademarks of World Down Syndrome Day, is rocking your socks!  This year I have a partnership with We Help Two, to advocate,  raise money and awareness for Down syndrome.  It’s easy and fun way to help out by ordering some cool, funky socks. We Help Two, sent me sample packages of these socks.  They are really bright, fun and well made.

You can purchase these socks at $15.oo per 3-pack, and it will be mailed to you, using 2-day shipping.  A large portion of the proceeds from this campaign will go directly to the National Association for Syndrome, (NADS) http://www.nads.org.

nads-logo

AND ON TOP OF THAT for every pack of funky socks sold, We Help Two will give a pair of warm, thermal socks to donate to our local homeless shelter.

warm-sock-photo

Help Nick and I knock the socks off World Down Syndrome Day by raising awareness, along with buying and wearing some funky socks.  You’ll be supporting NADS and helping the homeless.  That’s a win win for everyone!

To ORDER your FUNKY SOCKS click here:  

https://my.wehelptwo.com/campaign?reset=1&id=373

Hurry and order yours today so you can rock your socks on 3/21 WDSD!  Thank you in advance for helping us, and spreading the word that Down syndrome rocks. That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

IMG01

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

Posted in Down syndrome, Dual Diagnosis Down syndrome and autism, Recreation/Leisure and Special Needs, Resources for Special Needs

Winter 2017 Update

Posted on by tjunnerstall

Winter 2017 Update

I hesitate to call this a “winter” update, as we’ve been enjoying a string of mild, 65 degree days here in the Chicago area.

Hot tub in February, no jacket required…..

nick-hot-tub-feb

My son Nick, just celebrated his 23rd birthday a few weeks ago.  He has Down syndrome and autism.  He has been going to an adult day program, for the past year.  The program offers a variety of enriching activities, which he completely enjoys.  In addition, Nick does many community outings with his awesome respite caregivers, Jodi and Lara.  They go out to eat at a variety of restaurants, to the movies, library, and parks.  Nick loves being out and about, in the community.

We have been very active in our local Down syndrome support group, The National Association for Down Syndrome (NADS).  Even before we relocated to the Chicago area, NADS was instrumental in providing information and support for us.  They have been a vital resource for our family, and many others in the Chicagoland area.  To find our more information about The National Association for Down Syndrome (NADS), click here: http://www.nads.org.

nads-logo

The NADS Bowl-A-Thon event, is coming up on March 5th.  This event, is the single largest fundraiser for NADS.  This year, Nick has a fundraising page for his bowling team. You can click on the link to support Nick’s Elbow Bumpers Team and NADS:

http://www.firstgiving.com/fundraiser/nick-unnerstall/nads-32nd-annual-bowl-a-thon 

Big Guy’s signature elbow bump with his brother, Hank…..

nick-and-bro-x-mas

One more update, I want to briefly mention is coming up on March 21st, which is World Down Syndrome Day. 

world-down-syndrome-day

“World Down Syndrome Day is observed on March 21. On this day, people with Down syndrome and those who live and work with them throughout the world organize and participate in activities and events to raise public awareness and create a single global voice for advocating for the rights, inclusion and well-being of people with Down syndrome.”

One of the trademarks of World Down Syndrome Day, is rocking your socks!  This year I am working on partnership to raise money and awareness for Down syndrome, where you can purchase some funky socks.  I’ll be posting more information about this next week, on this site and the social media sites listed below. Stay tuned……

funky-socks

The Down syndrome community has supported Nick and our family, so much over the past 23 years.  These fundraising efforts are the least that we can do to give back, and help other families going down the same path. Having a community of support has helped us to navigate Nick’s world. Now at age 23, Nick is a very happy, young man who enjoys life.  That certainly brings a smile to my face. 🙂

nick-smiling

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

~Teresa

Follow Nick:

Down Syndrome With A Slice Of Autism on Facebook and Pinterest

#nickdsautism on Instagram

@tjunnerstall on Twitter

 

 

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

Blog #163~Safety & Your Special Needs Child

Posted on by tjunnerstall

autism-elope

Blog #163~Safety and Your Special Needs Child

I’ve written a few posts about elopement in past blogs. The terror of losing a child is unlike anything else.  My son Nick has Down syndrome and autism, and I know first hand how that feels.  It is essential to put safety measures in place to prevent wandering/elopement.  This week’s blog is about safety and prevention measures from a police officer’s perspective.

police-car

Recently at the National Association for Down Syndrome (NADS) retreat, a presentation was given by a NADS member, who is a police officer.  Some of the key points made were on safety and  wandering/elopement prevention.  Seatbelts alone don’t always work for older kids with special needs.  There are many seat belt locks available as well as bigger car seats for children over 65 pounds, which have  5 point restraint.

5-point-harness

There were several suggestions given to promote safety, and prevent elopement.  Putting stop icons on all doors, using door/window alarms,  and changing the locks or moving them higher.  It might also be necessary, (especially if your child is non-verbal), to invest in a tracking device/bracelet and an identification bracelet.  Some police departments have tracking devices available.  For more detailed information on this, type in “Blog #142” in the search engine on the top, right side.  Blog #142, gives specifics on elopement and autism.

caretrak bracelet

Nick wears a medic alert bracelet that stays securely on.  Information on the back includes his name, medic alert number, Down syndrome, autism and non-verbal.

medic-alert

Check with your local police department about getting in the data base to provide more detailed information about your child with special needs.  Here in Illinois, the Premise Alert was mandated, in 2009. The Illinois Premise Alert Program (Public Act 96-0788) provides for Public Safety Agencies in the State of Illinois to allow people with special needs to provide information to Police, Fire and EMS personnel to be kept in a database.

In addition to the  Illinois Premise Alert Program, a new program aims to take 9-1-1 a step further. Smart911 is a program that supplies 9-1-1 operators with detailed personal information, including names of family members, photos, allergies, pets and more.

smart911

Smart911 is available in participating dispatch centers across the United States.Smart911 enhances the information that a 911 call can provide and helps first responders help you faster during an emergency.  Citizens create an online profile through a secure website at www.Smart911.com. This profile contains information that might be important in an emergency. If you place a 911 call anywhere within the county, your profile is displayed to the 911 dispatcher at the Emergency Communications Center, and the information is relayed to first responders.  Smart 911 is a national service that is available free to everyone. The service can be especially valuable to households with young children, seniors, or anyone with a physical or mental disability.

It is essential to take precautions to promote the utmost safety and security for you child with special needs.  Especially if they are non-verbal and have no concept of how to keep themselves out of harms way.  That’s what is in my noggin this week.

~Teresa

Follow Nick:

Down Syndrome With A Slice of Autism on Facebook and Pinterest

#nickdsautism on Instagram

@tjunnerstall on Twitter

 

 

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

Blog #141~Managing Stress as a Special Needs Parent

Posted on by tjunnerstall

Blog #141~Managing Stress as a Special Needs Parent

Let’s face it, parenting is stressful.  Being a parent of a special needs child adds even more stress.  It’s a constant state of being on call 24/7, 365 days of the year.  I have been in this state for 22 years with my son Nick, who has Down syndrome and autism.

This weekend, we attended the National Association for Down Syndrome (NADS) retreat.  It is an opportunity for Nick to have fun swimming, playing and doing music therapy.  We’ve been going to this twice a year for the past 11 years.  It is a great group of folks who get it.  You see we don’t fit in to either the Down syndrome support groups or the autism groups.  But at this retreat, we all can openly discuss the unique problems of raising a child with a dual diagnosis of Down syndrome and autism, in addition to  behaviors associated with ADD,ADHD and more.

Nick 2 (2)

At the NADS Down Syndrome and More retreat http://www.nads.org/, Dr. Louis Weiss did a presentation for the parents about taking care of yourself.

He identified areas in our lives that we nurture or neglect:

*Health (mental/physical)

*Relationships (partner, kids, family, friends)

*Work

*Play

Dr. Weiss emphasized the importance of finding your oasis.  How do you recharge your batteries?  What do you do to relax?

relax frog

It is critical to avoid the traps of maladaptive coping for stress with such things as excessive use of drugs/alcohol, sleeping, overeating, withdrawing/avoiding, becoming over-controlling or compulsive (too much screen time or games like candy crush).

Instead, use adaptive coping strategies to restore calm, get centered and refuel.

relax

Adaptive Coping Strategies:

*Mindfulness Practice

*Meditation

*Prayer

*Exercise, eat well, get enough sleep

*Journaling

*Hobbies (gardening, reading, sports, knitting,etc)

*Use organizing techniques for schedules, tasks, etc.

*Support groups (both in person and online)

*Utilize community resources

*Delegate responsibilities and rebalancing the division of tasks

*Setting limits and sticking to them

*Asking for help. Identify sources of support, including professionals.

Taking care of yourself means taking time for you, and doing so without guilt.  Just like the flight attendants demonstrate, put that oxygen mask on yourself first before you place the one on your child.  And you will both breathe a little easier.

oxygen mask

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 139~World Down Syndrome Day 2016

Posted on by tjunnerstall

Blog 139~World Down Syndrome Day 2016

wdsd2016

Today is the United Nations official recognition of World Down Syndrome Day (WDSD)!   The date for WDSD being the 21st day of the 3rd month was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome.”

trisomy 21

“Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition, being universally present across racial, gender or socio-economic lines, and affecting approximately 1 in 800 live births, although there is considerable variation worldwide. Down syndrome usually causes varying degrees of intellectual and physical disability and associated medical issues” Courtesy of Wikipedia

Each year the voice of people with Down’s syndrome and those who live and work with them join together to focus attention on what it means to have Down syndrome and how those with the condition play a vital role in communities across the world.  My son, Nick is 22 years old and has Down syndrome (Trisomy 21) and autism.  He has touched more lives than I could have ever imagined.

IMG01

Events to raise public awareness to create a single global voice are listed on their website: www.worlddownsyndromeday.org.

Our local support group here in Chicago has been a lifesaver for 15 years. Check out their site, it’s loaded with good information:  National Association for Down Syndrome (NADS) http://www.nads.org.

Nick participating in music therapy at the NADS Retreat….

Nick

NADS is doing a 21 Day challenge.  Click here if you would like donate just $21 @http://nads.us10.list-manage1.com/track/click?u=9922ff656d4cb30bb58c685cc&id=26f657228a&e=9cb0029bf5

How does the future look regarding research and Down syndrome?  LuMind Research Down Syndrome Foundation leads the charge in cognition science and research http://www.lumindrds.org:

Their mission is to stimulate biomedical research that will accelerate the development of treatments to improve cognition, including memory, learning and speech for individuals with Down syndrome so they can:

*Lead more active independent lives

*Participate more successfully in school

*Avoid early onset of Alzheimer’s disease

In the U.S., there are 250,000-400,000 persons with Down syndrome and these individuals are 3-5 times more likely to develop early-onset Alzheimer’s disease. Despite these numbers, there remains a great need for pharmacologic therapies to improve learning and behavioral challenges, as well as the increased likelihood for Alzheimer’s disease in persons with Down syndrome.

Today,  LuMind is hosting a virtual run fundraiser. In addition, there are other opportunities for runners to raise money towards this cause.  Click here for more information: http://www.lumindrds.org/ . Follow them on Facebook @LuMind RDS

Happy World Down Syndrome Day from Nick!  He’s an awesome guy.  The future looks bright and I look forward to sharing more about his journey. Thank you for reading and sharing WDSD 2016. Has someone with Down syndrome touched your life? I’d love to hear about it. That’s what is in my noggin this week.

~Teresa

Nick in the Diveheart Scuba Program, never set limits….

Diveheart 2013 336

Follow Nick:

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Posted in Autism, Down syndrome, Speech and Occupational Therapy

Blog #121~10 Years of Autism

Posted on by tjunnerstall

Blog #121~ 10 Years of Autism

Last Saturday, the Chicago White Sox gave a replica of the 2005 World Series Ring to all the fans. This was to commemorate the 10 year anniversary of the Sox winning the World Series.

This sure beats the heck out of any bobble head they’ve given out…

White Sox Ring

I slipped the heavy ring on, that Al brought home from the game. I thought back on the week that the White Sox won the American League Championship securing their spot in the World Series. That was the week, that we got the firm diagnosis that our son Nick, had autism. Nick is now 21 years old and has Down syndrome along with autism. A lot has happened in the last 10 years, and I’ve learned plenty in the process.

Sox Nick and mom

What about the 11 years prior to the diagnosis of Nick having autism? Well, when he was 5 years old we had him tested but it was found that he was not on the autism spectrum because he was highly social and the oddities were due to having Sensory Integration Dysfunction.

According to the Sensory Processing Disorder Foundation (SPD Foundation), “Sensory Processing Disorder (SPD, formerly known as “sensory integration dysfunction”)

is a condition that exists when sensory signals don’t get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks.”

Nick sought out input by tapping objects, walking heavily and stimming with his toys to help organize his senses. His occupational therapist worked with him weekly providing him with a sensory diet.

photo (115)

In addition, Nick also has Verbal Apraxia of Speech (an acquired oral motor speech disorder affecting an individual’s ability to translate conscious speech plans into motor plans, which results in limited and difficult speech ability). The sensory and speech conditions blurred the lines, therefore the autism didn’t come to view at the time.

As Nick entered the throes of puberty, it became evident that there was more to his behaviors than just Down syndrome. That’s when we sought out Little Friends Center for Autism to do an assessment 10 years ago. Looking back I had a hunch he did. However, part of me wasn’t ready to face such a daunting diagnosis as autism. We got the report from Little Friends the day that the White Sox won the ALC championship. That report was the key to opening up a new world for us.

The official diagnosis of autism, allowed us to request more specific services for Nick. This included a better communication system, behavior plan, training, finding the NADS (National Association for Down Syndrome) support group for dual diagnosis families, and respite care through the state. With the help of Little Friends, I attended training sessions to help Nick foster independence and better communication. More importantly, I learned how to get my son toilet trained once and for all, and out of those Depends diapers.

Nick has grown a lot in the last 10 years. Things are not near perfect, nor will they ever be. We face our daily  battles. He is still stimming and raising autism awareness everywhere he goes. But the meltdowns are fewer and far between. Nick is happy and a funny guy. And when I see him standing there in his boxer briefs I am reminded of perhaps the greatest accomplishments in my life. I’m proud to say that we are done with what our autism community refers to as “Code Brown”

No more poop smears!

poop icon

If you are a parent and have a hunch that your child may have autism, this is my wish for you. That you go get an assessment, take that piece of paper and use it as your ticket to get the services to help your child.  Seeing where Nick is today is a sweet victory that I savor.  It feels like I’m winning the series in Nick’s world.  That’s what is in my noggin this week!

~Teresa 🙂

Posted in Autism, Behavior/ ABA, Education and Special Needs, Feeding, Personal Hygiene, Toileting, Tech Stuff/Apps and Video Based Instruction

Blog #52~ Tech Time

Posted on by tjunnerstall

geek pic

Blog #52~Tech Time

A few weeks ago at the National Association for Down Syndrome (NADS) Retreat the guest speaker did a presentation on using video based instruction and mobile technologies to support learners with Down syndrome and other developmental disabilities.  Toni Van Laarhoven, an associate professor in the Department of Special and Early Education at Northern Illinois University (NIU) gave us some great information on how to implement it.

Video modeling for can be used for teaching a variety of social, academic, and functional skills.  In the April 2012 archives, Blog #5~Ready, Set, Action, I wrote about how effective these have been in teaching Nick a variety of job skills.  He learned how to unload the dishwasher, load the washing machine and how to use the vacuum cleaner.

Nick vacumming_Tabor Hills (5)

Before video modeling we used social stories.  Basically this is like a script that you want the child to follow.  With Nick also having autism, it helps him to see it in picture form so he can better understand.  Nick has a thing for sneezing right in your face on purpose.  His teacher made this social story, here is part of it…….. aaaaachoooooo 🙂

photo (115)

These visual supports were effective, but his interest level when reading social stories was nothing compared to when he started watching the video models.

Here are a few ideas  I came up with for video modeling:

Teach a job skill

Teach a fine motor skill (cutting food, buttoning a shirt, pour milk, handwriting)

Teach a gross motor skill (swimming strokes, riding a bike, yoga positions.)

Grooming routines (brushing teeth, washing face, dressing.)

Bedtime routine

Change in routine (picture day at school, new curriculum unit in P.E., new school)

Visit to doctor, dentist, blood draws, and haircuts

Trip to the zoo, baseball game, mall, movie theater

Appropriate leisure activities to do at home (watch a movie, computer/X-Box)

Teach social skills (playing games with peers, turn taking)

It’s best to choose one behavior or skill to work on at a time.  Have the child watch the movie before engaging in the activity on a consistent basis.  For a job skill, many students have a video on their hand held device (iPod) and can follow the prompts as they work.  Ultimately, using video models can foster greater independence.

Shooting the videos can be done using an adult or peer model going through the sequence.  Simple verbal prompts should be provided.  For example, for pouring milk you can script it like this.

  1. Go to cabinet and get a cup.
  2. Go to the refrigerator and get milk.
  3. Open cap and pour milk in cup.
  4. Put cap on milk.
  5. Put milk container back in the refrigerator.

Another way to use video modeling is to make a video resume.  Toni made one of her sister who has significant disabilities.  This video showed in detail her routine.  The narrator pointed out specific details, likes, dislikes that added clarity to how she navigates her day.  This would be extremely helpful for a new staff, teacher, and direct care provider.  A few years ago, Toni’s NIU students put together a video resume of Nick called Project MY VOICE.  Like Toni’s sister, his showed what he did at school, his likes (music, community outings, etc..) and pointed out things that might upset him (saying “no” to him, changes in schedule, etc…)  Nick was very proud to show the video at his IEP meeting that year. 🙂

There tons of programs and apps that are available for assisting persons with special needs.  Here are just a few that have been recommended to me:

*Follow a schedule with Picture Scheduler:

picture schedule app

*iPrompts- Visual support, schedules, picture prompting for autism and special education.

*Artiks Pics-Vocabulary flashcards, memory games

*www.autismspeaks.org/autism-apps

*First Then Visual Schedule:

first then app

*ABA (Applied Behavior Analysis) and educational apps:

fruit app

happy sad app pic

Alphabet Tracing:

alphabet tracing

Sensory Fun, Light Box App:

light box app

Silly Fun, Talking Tom 2 (Nick’s going to love this one. Tom just cut one here, stinky) 🙂

talking tom

The list goes on and on, you get the idea.  There’s an app for just about everything.

Video based instruction, using mobile devices and prompting systems are effective tools in helping our kids navigate their world to become more independent. Put the power in their hands! That’s what is in my noggin this week.

~Teresa 🙂

Posted in Autism, Down syndrome

Blog #48~Joy and Sorrow

Posted on by tjunnerstall

Blog #48~Joy and Sorrow

Yesterday during the homily at mass the message began with the feeling of true sadness for those who witnessed Jesus dying on the cross.   Then just imagine days later what it must have felt like to see the rock pushed way from the tomb and find it empty.  But then Jesus reveals himself as having risen and bringing the great message of eternal life. What an array of emotions.  The depth in which we experience a range of feelings can be overwhelming. The homily message was this…..  Life is like that with the ebb and flow of joy and sorrow.

Rewind 19 years ago to the moment Nick was born.  “It’s a boy!  Does he have all his fingers and toes?”  He did and he was beautiful.  He was smaller than his brother and his hair was lighter. He was perfect. 🙂 We were elated!  Within ten minutes, they whisked him out of the room for further examination.  He was having breathing difficulties.  The room became silent.

Like a light switch the emotions flipped from joy to fear.  Time ticked away as I sat there deserted waiting to find out if my baby was okay.  Cold and alone under a bare sheet and thin blanket, I braced myself.  It seemed like forever until the doctors came back with Al.  Fear was replaced by sorrow.  I saw it all over their faces.  I could tell the news was not going to be good.  Two words:  Down syndrome.  These two words would change our lives forever.

I never saw Down syndrome as the end of the world. After a week in ICU, the breathing tube and monitors were unplugged and we were able to bring him home.   It was more like entering a different world.  Emily Pearl Kingsley wrote this poem about her experience.  She has a son who has Down syndrome.

“Welcome to Holland”
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this: When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland. – Emily Pearl Kingsley

Baby Nick sleeps contently after his christening.  See how baggy his white jumper looks with his low muscle tone………

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Our trip to Holland, while unexpected was filled with joy and sprinkled with sorrow.  There were twinges of jealousy on occasion wishing my child could do the normal things that most children naturally did. But what was much more devastating was the second diagnosis of autism.  The trip to Holland took a bad turn to what resembled Siberia. This change in flight plans changed the game entirely.  For me, this is when sorrow took over.  This new world felt isolated.  My son didn’t fit in with the Down syndrome support group anymore.  The autism groups all seem to have children who were higher functioning both academically and stronger verbal skills.  I felt lost and found myself pulling inward.

Eventually, I plucked myself up, got out of the funk and sought support.  Little Friends Center for Autism helped me educate myself and offered trainings to help my son navigate his world better.  The National Association for Down Syndrome (NADS) offered a retreat for families with a dual diagnosis.  This is where we found parents who “got it.”  We all shared similar stories.  Some which we dared not to tell anyone else before as it would be too shocking.  We laughed and cried as we commiserated.  We found a new home.

Right now the days are filled with more joy than sorrow.  But like all of us there are times where I feel overwhelmed and sad.  I try to remember what saved me. Stay plugged in and ask for help. Always keep the faith that there will be better days ahead.  That’s what is in my noggin this week.

~Teresa

This smile brings me great joy…….. 🙂

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