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

Back to School Tips for Special Needs Parents

Back to School Tips for Special Needs Parents

Back to school helpful tips

It’s the time of year when parents get busy preparing their kids for the new school year. There is added stress and things to consider when you have a child who has intellectual and developmental disabilities. You can help your child by planning ahead, getting organized and putting visual supports in place before school starts.

Here are 5 tips to ensure a smooth start to the new school year for your child with special needs: https://nickspecialneeds.com/tag/haircuts-and-special-needs-child/

Navigating the new school year, which may include changes in staff, venues and classmates can be challenging. But with careful preparation, parents can guide their child to have a successful start, with less anxiety and more confidence!

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

~Teresa 

Follow Nick:

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

Wandering and Autism: 7 Prevention Strategies

 Wandering and Autism: 7 Prevention Strategies

April is National Autism Awareness Month.¬† According to the National Autism Association, “Nearly half of children with autism engage in wandering behavior. Wandering occurs across all settings, under every type of adult supervision”.

Eloping picture and definition

There are safety precautions and prevention strategies families can put in place to secure a child that may run, bolt or wander.¬† I’ve had a few scares with my son over the years.¬† My son Nick is 25 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). Nick has no concept of the danger, and he can be fast; so we are always on high alert both at home and in the community.

A few years back, I wrote a blog addressing elopement which includes 7 prevention strategies. Here is our story of a scary day when Nick went missing, and what we’ve put in place to avoid wandering since then.

Click to read 7 Prevention Strategies for Wandering and Autism: https://nickspecialneeds.com/2013/07/01/blog-60wandering-and-autism/

Wandering and autism

Wandering is a real risk for individuals with autism and other special needs. Putting a plan with prevention strategies in place at home, school and in the community can reduce the risk of your child to elope and provide security for you as a family.¬† That’s what is in my noggin this week.

~Teresa ūüôā

Follow Nick:

Facebook and Pinterest @Down Syndrome With a Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

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

DS-ASD~Evaluating Your Child’s Progress Mid School Year

DS-ASD~Evaluating Your Child’s Progress Mid School Year

progress report

Spring is right around the corner. This is a good time to check in and see how your child is progressing with IEP goals and behavior. A child with a dual diagnosis of Down syndrome and autism (DS-ASD), may have additional deficits in speech and challenging behaviors.

Mid-year is a critical time to re-evaluate the teaching methods and current goals set in place, to help your child succeed. Here are five things parents can do now, to take action before the school year ends: https://nickspecialneeds.com/2018/03/12/blog-199take-action-before-the-school-year-ends/

Keep the lines of communication open with school staff, review IEP goals and progress and collaborate with the IEP team to ensure supports are in place so your child will have a strong finish to the school year.¬† Checking on your child’s progress will help you and the school staff be on the same page at the next IEP meeting.

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

~Teresa

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

Posted in Adult Day Programs for Special Needs, Autism, Behavior/ ABA, Down syndrome, Dual Diagnosis Down syndrome and autism, Recreation/Leisure and Special Needs

Blog #229~DS-ASD Winter Update

Blog #229~DS-ASD Winter Update

Chicago winter 2019

This winter weather has been bitter and harsh, here in Chicago.¬† Fortunately, we missed the plummeting temperatures last week, while vacationing in Vail, Colorado.¬† My son, Nick is 24 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD).¬† Here’s an update on what Nick’s been up to this winter and the highlights of our trip to Vail.

The weather in Vail was mild, with temperatures in the 35-40 degree range and plenty of sunshine.  There is something to be said about sunlight and how it can elevate your mood.  The clear blue skies, warm sun, fresh air, and beautiful mountain views, can do wonders for the soul.

Vail sunset 2019

Nick enjoyed his time with our friends in Vail.¬† The village is always a fun place to visit.¬† Here’s Nick at lunch and with his Dad, Al :)…..

 

The highlight of the week, for Nick was dog sledding.¬† This is the second year we’ve done this with Mountain Mushers, who offer the best dog sledding rides in the Vail Valley.¬† Nick was happy to see his buddy, Cameron who was our dog sled musher last year.¬† He always gets such a kick seeing all the happy dogs, who bark with excitement as the sleds loaded up.

All bundled up in the sled and ready to go, and guess what, he actually kept his hat and gloves on this time.¬† Yay Nick! ūüôā

 

The scenic trail was packed with alot more snow this year, making the ride faster. His favorite part is when the sled goes over the bumps and flies down the hills. Nick is a thrill seeker, who always signs “more” when a roller coaster ride is over.¬† He also loves the Disney movie Snow Dogs, so this was a perfect blend of his favorite things.¬† Towards the end of the ride, his Dad got to try his hand at mushing.¬† Check out the Facebook, Instagram and Twitter links below to see videos of them dog sledding in action all this week. ūüôā¬†

Today it’s a balmy 50 degrees here in Chicago, and Nick has returned to his adult developmental training day program.¬† It’s hard to believe the turn around in temperatures…‚Ķ

Chicago temp difference

As I’ve mentioned in previous blog posts, Nick attends a day program that he truly enjoys.¬† The adult developmental training program curriculum includes functional and academic work activities, crafts, exercise, cooking, entertainment, and community outings.¬† The staff reports that Nick has so much potential and does awesome at the learning centers and work choices.¬† They have a lot of fun, especially over the holidays. Activities included a big Christmas lunch, wearing ugly sweaters, listening to a local high school choir and making wreaths, gingerbread houses and pillows.

Here’ s a no sew pillow that Nick made…..

nick pillow

If you look closely in the picture above, you might notice a stop icon on the dishwasher.¬† There are many of these stop signs on the start buttons around our house.¬† Individuals with a diagnosis of autism can benefit from the use of icons, to better guide their days.¬† Nick has a thing for pushing buttons and fire alarms.¬† His behavior support plan (BSP) addresses the fire alarm pulling.¬† Twice each day, the staff at his day program take him on a walk down the hallways.¬† They encourage and cue him to “keep walking” with “hands to self”.¬† Before these walks, the staff reads his social story that contains pictures of how to¬† navigate these hall walks.¬† Upon successful completion, Nick earns a reward.

Click on this link to learn more about the BSP and his social story: https://nickspecialneeds.com/tag/social-stories/

That wraps up Nick’s world and what he’s been up to this winter.¬† Navigating a dual diagnosis of¬† DS-ASD has it’s good and bad days.¬† Fortunately, the good days now outweigh the bad.¬† I think it’s both maturity on Nick’s part, along with the wisdom and understanding gained from being his parent.¬† Big guy has a milestone birthday coming up, I look forward to sharing more with you next Monday!¬† What is one thing that Nick has taught you over the past 24+ years?¬† I’d love to hear your feedback. ūüôā

That’s what is in my noggin this week.

~Teresa 

Follow Nick on Social Media to see more pics and videos:

Nick head shot in vail

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism and more on dog sledding #mountainmushers

Twitter @tjunnerstall

 

 

 

 

 

Posted in Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism, Government/Legal Matters Related to Special Needs, IEP (Indivdualized Education Plan)

Blog #195~ Being a Firestarter

Blog #195~ Being a Firestarter

What is the difference between those bold enough to pursue their dreams and others who never get comfortable enough to ignite their lives? The doers are ‚ÄúFirestarters‚ÄĚ and, because of them, the world is a much different, and often, better place.

Fire

Are you looking for a way to ignite your life and dreams?¬† Firestarters-How Innovators, Instigators and Initiators Can Inspire You To Ignite Your Own Life,¬† is a new book released last week; that will help you to do so. As I wrote in last week’s Blog #194, Firestarters are innovators, instigators and initiators that get things accomplished.¬† Recently I had the opportunity to interview one of the co-authors of this new and powerful book, Paul Eder along with a featured Firestarter, David Egan who is an advocate for special needs.¬† This week, I am sharing more on these interviews about being FIRESTARTERS!

Firestarters

David Egan is the first person with an intellectual disability to be awarded a Joseph P. Kennedy JR. Public Policy Fellowship, he made history by working on Capitol Hill with the Ways and Means Social Security Subcommittee.  David Egan, born with Down syndrome, is a trailblazer for others who have intellectual disabilities.

David Egan-Advocate Photo

He believes in promoting the idea of people with disabilities having special talents.  David states that people with intellectual disabilities should be included in as many sectors of our society as possible, and being featured as a leader in this book makes made him proud.  The most important part of his advocacy is to demonstrate that people like himself are Valued, Able, and Ready to work.

David Egan Work Photo         David Egan swimming

“We are citizens that matter and we belong in our community.” -David Egan

David-Egan-Capitol-Hill-2011

“People with intellectual disabilities do not want pity; we want respect, inclusion, and the opportunity to reach our full potential like any other citizen.” -David Egan

Paul Eder is the co-author of Firestarters along with Raoul Davis JR. and Kathy Palokoff.¬† From early on, Paul Eder wanted the book to be inclusive.¬† He has a 6-year old son, Brady who has Down syndrome and believes his potential is limitless.¬† Paul says that a Firestarter is partially defined by the impact you have on others. His son, Brady has certainly impacted his life.¬† Paul hopes his son’s achievements go beyond and push the boundaries like David Egan.

I asked Paul how he plans to use the concept of Firestarters to help navigate his son through school and working with IEP team members? 

Paul said that, “The IEP (Individualized Education Plan),¬† generally taps into a number of the concepts we discuss in the Firestarters book, but the section on Accelerants is very relevant. Accelerants include: Mission-focused behavior, Cooperation, Constructive competition, sweat equity (working hard), and support seeking.”

Paul goes on to further state this about IEP’s:

“An IEP certainly focuses on the mission surrounding your child‚Äôs educational path. From a cooperation perspective, the IEP defies all the supporting partnerships that are necessary to propel his success.¬† All of the IEP goals are measurable, which gives it a competitive flair. We want the goals to be challenging but not impossible, and we want to be able to compare his progress against some standard of success (e.g., grade-level expectations). My son has a daily behavior log where his social and academic behaviors are tracked. From this sheet, we are able to tell whether he is putting in his full effort and devoting the sweat equity needed to learn. Support-seeking is an obvious one.”

“The IEP team is a support structure in itself.¬† As parents, we can‚Äôt be afraid to ask the questions needed of the team and push for the supports required to ensure his success.” -Paul Eder

I asked Paul how can someone support the Firestarters in their lives, especially those with potential but who may have special needs?

In the book we define 4 types of supporters based on the research we conducted:

1.Nurturers listen and help you follow through with your ideas.
2.Motivators get you moving. They are people like Tony Robbins who exude an energy that make you want to be a better person.
3.Illuminators are the teachers in your life who help you grow socially and intellectually.
4.Protectors are the people who defend you when others won’t.

A FIRESTARTER, seeks support to fan their flame, and finds ways to limit the influence of Extinguishers.

As we begin 2018, what do you want to accomplish?¬† Find the people who can support you and don’t allow the extinguishers to have power over your life.¬† We’ve all met FIRESTARTERS, and seen what they’ve accomplished.¬† They create, disrupt and start things.¬† The book FIRESTARTERS¬† interviewed successful entrepreneurs, CEO‚Äôs, organizational leaders, advocates and forward thinkers from a variety of professions to find out what makes them tick.¬† There are step by step guides to teach you how to join the ranks in whatever you want to accomplish.

For more information about FIRESTARTERS click here: https://goo.gl/4VmHKo

Thank you to Paul Eder and David Egan for sharing your inspiring stories of being FIRESTARTERS, who make the world a better place!¬† That’s what is in my noggin this week.

~Teresa ūüôā¬†

 

 

 

 

Posted in Down syndrome, Down Syndrome Awareness

October is Down Syndrome Awareness Month

October is Down syndrome Awareness Month

DS-Awareness-Month

October is Down syndrome Awareness Month.¬† I’ve had the privilege of raising my son,¬† for the past 23 years.¬† Nick has Down syndrome and autism. He has touched my life, and those of so many others along the way.

nick-senior-alarm-pic

Down syndrome awareness is about promoting acceptance and inclusion of all individuals with Down syndrome.

FACTS about Down syndrome from National Down Syndrome Society (NDSS):

*Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.

*There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95 percent of cases, translocation accounts for about 4 percent and mosaicism accounts for about 1 percent.

*Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.

*There are more than 400,000 people living with Down syndrome in the United States.

*Down syndrome occurs in people of all races and economic levels.

*The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women younger than 35.

*People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.

*A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.

*Life expectancy for people with Down syndrome has increased dramatically in recent decades ‚ÄĒ from 25 years old in 1983 to 60 years old today.

*People with Down syndrome attend school, work and participate in decisions that affect them, and contribute to society in many wonderful ways.

*All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.

*Quality educational programs, a stimulating home environment, good health care and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

More information @http://www.ndss.org/Down-Syndrome/What-Is-Down-Syndrome/

NDSS_logo

Here are a few simple ways to promote Down syndrome awareness:

*Post something about Down syndrome on social media

*Send updates, pictures and tell your story to your family doctor and OB-gyn.

*Many local Down syndrome support groups have promotional materials, like books and bookmarks that can be distributed at libraries and schools.

*Many local DS support groups have public speakers who can talk to schools, businesses, community groups, hospitals, and other organizations.

*Support or volunteer for local fundraisers like the Buddy Walk in your community @http://www.ndss.org/buddy-walk/

*Encourage your kids to volunteer for Special Olympics and Best Buddies programs through their school.

Down syndrome journey

Thank you for supporting Down syndrome awareness this month!¬† That’s what is in my noggin this week.

~Teresa ūüôā

 

 

 

 

 

 

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

Blog #166~ Lessons Learned on a Ski Slope

vail

Blog #166~ Lessons Learned on a Ski Slope

After a 27 year hiatus, I recently went on a¬†ski trip to Vail, Colorado.¬† My older son, Hank had never skied before so we opted to take a lesson together.¬† Our instructor Brad, offered up many¬†useful¬†tips to help us navigate the slopes. Many of the things that Brad pointed out, can¬†apply to raising a¬†child with special needs. ¬†My younger son, Nick is 22, and has Down syndrome and autism.¬† The daily challenges can weigh a parent down both physically and mentally.¬† That’s were the lessons I learned on a ski slope come in.

Lessons Learned on a Ski Slope…….

*If you point your ski’s too far uphill you are going to roll down…..

Over the years I’ve set goals for my son, Nick.¬† Many of these were aimed too high.¬† As a result, my expectations were not realistic, and Nick fell further back than I anticipated.¬† For example, during his elementary years Nick had a handwriting goal.¬† I was determined that he would be able to write his name and pushed hard¬†for several year to keep it in his IEP.¬† This goal was my dream, but¬†not Nick’s reality.¬† A pen or marker in Nick’s hands equals scribbling all over his skin and clothes.¬† I learned that you have to adjust your child’s goals to what is reasonable and attainable for them, and not for yourself.

*Don’t Fred Flintstone your feet…..

When you ski it’s important to shift the weight on your feet and apply the pressure at different points in order to make the turns.¬† If you dig in and “Fred Flintstone” your¬†feet, the skiing becomes rigid and doesn’t glide naturally.¬† There has to be room for some¬†give and take, when working with a child with special needs. It’s¬†unfair to¬†put pressure¬†on¬†your child to do everything you¬†want,¬†in a given day.¬† Sometimes you have to let that foot up and allow them to have room to understand, process, and do things in their own time. Take your foot off the brakes, otherwise, things will break down for your child.

fred-flintstone-feet

*Learn how to stop correctly…….

The day before our ski lesson, my son Hank went out with his Dad, Al, to try out skiing.  He came home very tired, cranky and discouraged due to going to fast, falling, and struggling to get back up.  During the ski lesson, he learned how to maneuver his body, and the proper ways to stop.  Afterwards, Hank had much more confidence and felt success.  If you push your child with special needs to do too much, they become frustrated as Hank did. This can lead to a risk of sensory  overload and potential meltdowns.  Recognize those signs of distress, and stop the activity before your child reaches a boiling point.

Hank and I with our ski instructor, Brad…..

vail-with-brad

*Relax and take in the scenery….

On the ski lift, our instructor Brad, encouraged me to put my ski’s up on the foot rest and relax.¬† He could sense that I was nervous about leaving the comfort of¬†the bunny slope.¬† He reminded me to breathe, look around, and take in the beautiful¬†scenery.¬† I think the same can be true in life with a child who has special needs.¬† The seamless schedule of doctor and therapy appointments, along with the pressure of working with them at home can get to be too much.¬†¬† Nick had¬†very low muscle tone, which is a trait of having¬†Down syndrome.¬† I was constantly providing stimulating activities and exercises to get him stronger so he could roll over, crawl, sit up and walk.¬† Beyond gross motor skills, there was work to be done with feeding, speech and fine motor skills.¬†The guilt of not feeling like you are doing enough for your child can burden a parent even more.¬† At some point,¬†you have to just relax and not beat yourself¬†up.¬† Take a breath and enjoy the beauty of your child for who they are.

My son, Nick……

nick-senior-alarm-pic

Skiing like many other sports offer lessons for us to learn in our lives.¬† That day on the slopes,¬† I was reminded about the importance of being flexible in what I expect from my son with Down syndrome and autism.¬† On the eve of his 23rd birthday, I reflect back¬†on how far¬†Nick has come.¬† I going to take a moment and breathe.¬† Like the backdrop of the blue sky against the snow covered Rocky Mountains,¬† I¬†just want to¬†take that¬†in. ¬†ūüôā¬†

That’s what is in my noggin this week.

~Teresa

happy-birthday-boys

Wishing¬†both Nick and his Dad,¬†Al a very¬†Happy Birthday this week¬†……

al-and-nick-vail

Follow Nick on Instagram @nickdsautism, on Facebook and Pinterest @Down syndrome with a Slice of Autism and Twitter #tjunnerstall

 

 

 

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

Blog #148~The Kindness of Strangers

Blog #148~The Kindness of Strangers

You’ve heard of the random acts of kindness from a stranger.¬† Someone picks up the tab of the car behind them in a Starbucks drive thru.¬† I’ve never been lucky enough¬†to have my¬†tall, mocha frappuccino paid for¬†yet.¬† But over the weekend,¬†something like this happened to¬†Nick.¬† My son is 22 years old and has Down syndrome and autism.

nick hotdog shirt

On Saturday evening,¬† Nick went out to IHOP for dinner with his respite caregiver’s family.¬† Jodi and Kelsey said he¬†was doing his usual antics; stimming, humming, laughing,¬†doing elbow bumps¬†and blowing snot rockets and wiping them on the booth.¬† (Or as we like to call it, spreading autism awareness).¬† There was a family behind them with two girls around the ages of 5 and 7 years old.¬† These girls were fascinated with Nick.¬† They watched his every move and were asking their dad¬† why he was acting that way.¬† Shortly after they left, the manager came over to their table and handed Jodi¬†the tab.¬† He told¬†them that the check had been paid for by the family with the two girls.

ihop check

Tears welled up in their eyes.  It was such a heartfelt moment of gratitude. There are so many bad things that happen around us every day.  The horrific tragedy this weekend in Orlando makes us all question what is happening to our society.  We tend to tend to forget that there are still good people in this world.  Thank you family with the two girls, who dined at the IHOP in Aurora, IL. Thank  you for reminding us that there are people in this world who have compassion and gracious hearts.

That’s what is in my noggin this week.

~Teresa

Follow Nick:

scan0016

Facebook@Down Syndrome With A Slice Of Autism

pintrest@Down Syndrome With A Slice Of Autism

instagram-logo#nickdsautism

 

 

 

Posted in Autism, Down syndrome, Fun Side of Nick, Uncategorized

Happy Thanksgiving

In my noggin this week (besides the to-do list) is¬†a post I¬†wrote¬†two years ago called,¬†“5 Reasons I am¬†Thankful for Nick”. Here’s the link:

https://nickspecialneeds.wordpress.com/2013/11/25/blog-755-reasons-i-am-thankful-for-nick/

Have a blessed Thanksgiving!¬† I am thankful for all your support and for reading & sharing Nick’s world.

~Teresa

 

Posted in Down syndrome, Fun Side of Nick

Vacation and Special Needs Child

Vacation and Special Needs Child

Last week, Nick put together this task strip.  I think he is ready to go on our annual vacation to the Outer Banks, NC (OBX)!

OBX Task Strip

We have been going to the Outer Banks for the past 5 years.¬†Nick loves the water.¬† It’s not easy getting a child with special needs to swim independently.¬† Nick is now 21 and has Down syndrome and autism.¬† Here’s some information on how he learned how to swim and why we love the beach so much@https://nickspecialneeds.wordpress.com/2012/08/13/blog-17-lifes-a-beach/ ‚Äé

I hope that you all find your happy place and get to relax this summer.¬† I know Nick is ready to go!¬† That’s what is in my noggin this week.

~Teresa ūüôā