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

 

 

 

 

Posted in Down syndrome, Down Syndrome Awareness, Parenting Special Needs

Blog #202~ Down syndrome, A New Beginning

Blog #202~ Down syndrome, A New Beginning

So this just happened, I flew back to Texas over the weekend to be with my niece, who is also my God-daughter.  Courtney recently gave birth to twin boys.  Shortly after their birth last December, she called me with the news that one of the babies might have Down syndrome. The first thing I felt was excitement inside, knowing that God has many blessings coming her way.  I told Courtney that everything was going to be okay, and that I’d be there for her every step of the way.  I know this to be a fact, because I have been blessed for the past 24 years with my son, Nick.

My niece didn’t know that one of her twins would have Down syndrome until after she gave birth.  Just as I did, the initial shock can take your breath away and a myriad of emotions come at you in waves.  However, like me she has rolled up her sleeves and embraced this diagnosis fully.  I couldn’t be more proud of her.

The twins Gannon and Greyson 🙂

Gannon and Greyson

Courtney jumped right in becoming an advocate for her son, Gannon.  Last month, she gave a presentation to her older son’s elementary school class on World Down Syndrome Day……

Gannon WDSD

For World Down Syndrome Day, Courtney had special shirts made for her immediate and extended family, as well as friends…….

Courtney and family

Here’s my son, Nick wearing his shirt to support #gannonsjourney and World Down Syndrome Day….

Nick Down right perfect

There is a lot of love felt in their home, along with a load of testosterone, with four boys under one roof.  Her two little dogs and cat lay on the couches close by, seemingly like protectors providing comfort as we sat and visited.

Gannon and me

It was a great weekend holding, feeding and loving on the twins, along with a few games of Battleship, Candyland, Toilet Trouble and snap chat photos with the older boys.  In between all of this, we had a chance to talk about our experiences together.  During the course of these conversations, I flashed back 24 years ago when I gave birth to Nick.  I told Courtney and her husband Patrick, how the pediatrician pointed out the initial markers that might indicate my son could have Down syndrome.  My doctor gently showed me the brushfield spots in my babies eyes, the larger gap space between the first two toes, and the feeling of low muscle tone in his body.  Courtney gasped when I mentioned my pediatricians name, she thought I was joking.  It turns out that they have the same pediatrician as I did!  Not only that, her husband (who also lived in this same area outside Houston) had Dr. K as his pediatrician growing up.  Courtney started to cry as we found the similarities in our lives being so serendipitous.  They were happy tears.

Who would ever predict that this little niece and God-daughter of mine would follow such a similar path?  At the moment this photo was taken, 28 years ago I was just a doting aunt to her…..

Courtney and me

Here we are 29 years later…..

Courtney Gannon and me

In December, after the twins were born, her pediatrician pointed out similar markers of Gannon possibly having Down syndrome.  I told Courtney over the phone, that she had this.  She was already ahead of the game, with her experience having Nick as her cousin.

Courtney and Nick, 1994…..

courtney and nick

Courtney and Nick, 2010………

photo (116)

I handed my niece this journal, on Saturday.  It felt as though I was passing the baton over, as she starts her own journey…..

Journal

The journey will be filled with highs and lows as she navigates her son having Down syndrome.  As the pen moves across each page, her eyes may be filled with tears during the struggles as he grows.  But there will also be many smiles when he triumphs the milestones of crawling, sitting up, walking, feeding and so much more.  Each benchmark will take longer to reach and require much more work.   But that is what makes these victories even sweeter.  My niece is just beginning this new path, and I both smile and take a deep breath inside, knowing what lies ahead.  My son has changed my life forever and filled me with God’s grace.  Like his cousin Nick, Gannon will touch many lives and teach lessons of gratitude in the process.

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

Follow Gannon #gannonsjourney

 

 

 

 

 

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

World Autism Awareness Day

World Autism Awareness Day

Autism Awareness Day

April 2nd is Autism Awareness Day.  “Autism spectrum disorder (ASD) is a complex developmental disorder that affects a person’s ability to communicate and interact with others. More than 3.5 million Americans currently live with ASD, and 1 in 68 children are born with a variation of it.”  With this staggering statistic, it’s likely that you have encountered an individual on the autism spectrum.

Not just today, but the entire month of April is Autism Awareness Month. During this month advocated seek to raise awareness,  understanding, acceptance, inclusion and self-determination for all individuals with ASD.

autism awareness 2016

One of the most famous and influential individuals with autism is Temple Grandin. “Temple Grandin is an American professor of animal science at Colorado State University, consultant to the livestock industry on animal behavior, and autism spokesperson. She is one of the first individuals on the autism spectrum to publicly share insights from her personal experience of autism. She invented the ‘hug box’ device to calm those on the autism spectrum.”

Temple Grandin quote 2“Based on personal experience, Grandin advocates early intervention to address autism and supportive teachers, who can direct fixations of the child with autism in fruitful directions. She has described her hypersensitivity to noise and other sensory stimuli. She claims she is a primarily visual thinker, and has said that words are her second language. Temple attributes her success as a humane livestock facility designer to her ability to recall detail, which is a characteristic of her visual memory. Grandin compares her memory to full-length movies in her head, that may be replayed at will, allowing her to notice small details. She also is able to view her memories using slightly different contexts by changing the positions of the lighting and shadows.  Her insight into the minds of cattle has taught her to value the changes in details to which animals are particularly sensitive and to use her visualization skills to design thoughtful and humane animal-handling equipment.”  (Wikipedia)

Today and throughout this month, advocates ask that you promote autism awareness and acceptance on social media, and encourage community support and understanding for individuals and families living with autism.

Autism support groups across the country are working with businesses to sponsor sensory friendly events.  Two of these are:

AMC movie theatres https://www.amctheatres.com/programs/sensory-friendly-films 

Chuck E. Cheese https://www.chuckecheese.com/deals-offers/sensory-sensitive-sundays

Although 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 Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

Posted in Down syndrome, Down Syndrome Awareness

Blog #201~Baby with Down syndrome named 2018 Gerber Baby

Blog #201~Baby with Down syndrome named 2018 Gerber Baby

The 2018 Gerber baby was just named last month, and he is Lucas Warren, the first child with Down syndrome to receive the honor.  The 18-month-old from Dalton, Ga., was selected as “2018 Gerber Spokesbaby” from more than 140,000 photos submitted by parents.

Lucas’ winning smile and joyful expression won our hearts this year, and we are all thrilled to name him our 2018 Spokesbaby,” Bill Partyka, president and CEO of Gerber, said in a press release. “Every year, we choose the baby who best exemplifies Gerber’s longstanding heritage of recognizing that every baby is a Gerber baby, and this year, Lucas is the perfect fit.

Gerber baby 2018

The original Gerber baby was Ann Turner Cook, who recently celebrated her 91st birthday. The black-and-white sketch of her face from 1927 became Gerber’s iconic logo. Since then, the company has received a myriad of photos from parents who see their own babies in the famous sketch.

Gerber Baby now and then
Eight years ago, Gerber launched the Photo Search to celebrate these adorable babies.  Lucas’s winning smile and joyful expression won their hearts, this year.  His mother, Cortney Warren was extremely proud:

“This is such a proud moment for us as parents knowing that Lucas has a platform to spread joy, not only to those he interacts with every day, but to people all over the country.
We hope this opportunity sheds light on the special needs community and educates people that with acceptance and support, individuals with special needs have the potential to change the world ― just like our Lucas!” 

Congratulations to Lucas!  Thank you Gerber for recognizing the beauty in all children, and taking an inclusive stance by selecting a baby with Down syndrome.  Every baby really is, a Gerber baby!

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

 

 

 

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

Blog #200~World Down Syndrome Day

Blog #200~World Down Syndrome Day

“World Down Syndrome Day is Wednesday, March 21, 2018 and its purpose is to raise awareness around the world of what Down syndrome is and the vital role people with Down syndrome play in our society. The day has been officially observed by the United Nations since 2012 and the date — always on the 21st day of the 3rd month — is meant to highlight the uniqueness of the triplication (trisomy) of the 21st chromosome, which is the cause of Down syndrome.”

World Down-Syndrome-Day

World Down Syndrome Day is an opportunity for all of us to promote awareness, understanding and inclusion.  Lack of knowledge and understanding can prevent people with Down syndrome from being accepted and included in society.  The message is simple, every individual is unique, we all have value, and everyone has the right to live a happy and fulfilling life.  I heard a great quote the other day, “Down syndrome is just another way that humanity presents itself”.  

DSAwarenessMagnet

So, how can we promote awareness, understanding, inclusion and acceptance? 

Three Easy Ways To Promote World Down Syndrome Day:

1. Promote Down syndrome awareness on social media.  Rock your funky socks and T-shirts.  Let’s see them on Facebook, Instagram and Twitter.  Share inspiring, beautiful pictures, stories and videos of individuals with Down syndrome.  Tell us how an individual with Down syndrome has affected your life. Use hashtags, here are a few suggestions-  #wdsd #downsyndrome #321 #abilities #inclusion #funkysocks #downsyndromerocks #PROVETHEMWRONG

Nick Prove Them Wrong

My son Nick (pictured above) is 24 years old, and has Down syndrome and autism.  We’ve joined Noah’s Dad-Down syndrome awareness in their campaign #PROVETHEMWRONG.  More information at http://noahsdad.com/

2. Educate others about Down syndrome and encourage the use of person first language.  This means saying, “a person or individual with Down syndrome”.

Do NOT say:
* “A Down syndrome baby, child or kid.”
* “Down’s baby, child or kid”
* “Down’s”
* “He or she has Downs”

3. Encourage inclusion in your community.  What opportunities are available for meaningful jobs, volunteer work and other contributions for individuals with Down syndrome?  Are there any fundraisers like the Buddy Walk, funky sock campaign or other local DS support group activities, that you could get involved in?  Adults teens and children can volunteer to help with programs like the Special Olympics, Best Buddies peer program, and GiGi’s Playhouse.

Nick volunteering at GiGi’s Playhouse…..

nick-cleaning-gigis

Here’s an amazing business:  Bitty & Beau’s Coffee is more than just a place to grab a cup of coffee – it’s an experience. While the shop is run by people with intellectual and developmental disabilities and the customers love the products, they really come in for the unique customer service experience……..

bitty and beau coffee shop

Promoting awareness on social media, educating others about Down syndrome to use person first language, and finding inclusion opportunities are three great ways you can  support World Down Syndrome Day 3/21/18!  Help others to gain a better understanding, acceptance and inclusion for individuals with Down syndrome.  Let’s look past the diagnosis and see the uniqueness of each individual and their vital role to our society.  I can’t wait to see your posts on social media and rocking those funky socks for WDSD 2018!

We Help Two funky socks available at http://www.wehelptwo.com/ ………

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, Down syndrome, Dual Diagnosis Down syndrome and autism, Education and Special Needs, IEP (Indivdualized Education Plan)

Blog #199~Take Action Before the School Year Ends

Blog #199~Take Action Before the School Year Ends

How’s the school year going?  If you have a child with special needs; who is non-verbal or limited in speech, it’s difficult to know how they are navigating their day.  This is where you as the parent, have to be pro-active regarding your child’s progress.  Are they achieving the goals set in their Individual Education Plan (IEP)?  As a parent of a child with a dual diagnosis of Down syndrome and autism, I’ve learned the importance of staying on top of my son’s progress and behavior while in school.  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:

#1 How are you communicating with the school staff?

If you child is non-verbal or limited in speech, it’s imperative to find a way to dispatch information daily via email, text and/or a communication notebook.  Daily reports work can be created and customized to share about your child’s day, like these……

daily check sheet   daily check sheet two

#2 Organize all correspondence with the school and staff.

Use one notebook or binder for all meetings, conferences and IEP’s so you can refer back at anytime.  Keep all documents in this binder regarding your child, so it’s at your fingertips.  Log in dates and times of any correspondence with school.  Keep all school emails in a separate folder, on your computer.

#3 Review your child’s Individual Education Plan (IEP).

The IEP outlines academic and functional goals, supports needed, accommodations and services. Compare the current IEP goals to the quarterly reports.  How much progress has your child made in each goal area?  Are there any red flags (No Progress- NP)?  Make notes of your concerns.  What additional supports or accommodations that might better help your child succeed?

Examples of supports and accommodations:

Ex/ Halls or assemblies are crowded and loud.  The student experiences sensory overload, leading to meltdowns.  Add supports and accommodations such as noise cancelling headphones paired with a break card.  Have the child transition five minutes before the bell rings when the halls are quiet.

Break Icon   noise cancelling headphones

Ex/ Student shuts down to avoids a task, because it is too difficult.  Break down the task into individual steps supported with a visual task strip.  Set them up for success!

counting task strip       Nick packaging door knobs_Habitat_4 (2)

#4 Contact your child’s teacher to discuss ways to keep your child on track for the rest of the school year.

Request a meeting with the IEP team if there are setbacks in behavior, or “No Progress” (NP) being made on IEP goals.  Goals and the behavior plan can be adjusted anytime during the school year.  A meeting may be necessary if there are any new behavior problems that need to be addressed.

Ex/ Student needs motivation to complete work.  Create an incentive chart to work and earn a reward.  Brainstorm with the school staff to find a reward that is highly motivating for the student.  This  particular reward should only available upon completion of tasks.

working for chart

Ex/ Student has difficulties transitioning to the  next activity.  Make visual schedules for the student to navigate their daily routine.  Giving the student control with visuals, will help to reduce anxiety, and foster independent living skills.

APE swimming 006 (4)

Visual timers help a student stay on task, and then transition to the next activity….

visual timer app

#5 Look at the big picture of your child’s current growth and well-being.

Are the current goals ultimately promoting your child’s further education, employment and independent living?  Are the goals meaningful and relevant for their level of performance?

Does your child look forward to going to school each day?  Are there any signs that your child is withdrawing or regressing in performance and behavior?

Make notes and meet with the teacher at any time before the next IEP meeting. Collaborte together with the school IEP team, to make adjustments and accommodations as needed regarding goals and behavior.

IEP-Picture

Consistent communication, organization, and IEP goal and behavior reviews, are essential for a parent to do, throughout the school year.  Collaboration with the school staff will ensure a strong finish, for the remaining semester.  This will also make team planning for the next school year much easier, with no surprises.

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

 

 

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

Down Syndrome Awareness, Spread the Word!

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 Adult Day Programs for Special Needs, Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Fun Side of Nick, Recreation/Leisure and Special Needs

Winter Update: Nick DS-ASD

Winter Update: Nick DS-ASD

Here’s a look at Nick’s world, and what he’s been up to this winter.  My son Nick, is 24 years old and has a dual diagnosis of Down syndrome and autism.  He attends an adult day program which provides a variety of enrichment activities.  These include work time, communication and learning, recreation, cooking, gardening and crafting.  There are monthly theme parties and game time playing Bingo and Yahtzee.  His group enjoyed a variety of community trips to the grocery store, dining out, library and PetSmart.

Nick relaxing at his adult day program….

Nick AID new chair

Turtle time…..

Nick AID turtle

Crafting, Nick made some awesome pillows…..

Bingo Prize Winner!

Nick bingo prize

Community trip to PetSmart……

Nick Petsmart 1              Nick Petsmart 2

Each week, Nick goes on community outings with his respite caregivers, Jodi and Miss R.  They take him out to the movies, library, mall and to restaurants…..

Over the holidays, Nick celebrated with family here in Chicago and in Key West……

Nick Christmas 2017

Fun in the Florida Keys, including a trip to The Hemingway House……

In February, we celebrated Nick’s birthday in Vail.  Did you read last week’s blog #198, about his adventures in Colorado?

It’s been a busy winter packed with loads of fun for Nick!  Seeing all his smiles in the adult day program, community outings and on vacations assures me that he is having a wonderful life.  Having a dual diagnosis of Down syndrome and autism shouldn’t limit a family from getting out and having fun.  I hope these updates bring inspiration to other families who have a child with special needs.

That’s what is in my noggin this week!

~Teresa 🙂

To see more of Nick’s world check out these social media sites:

Facebook: @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

Posted in Autism, Down syndrome, Recreation/Leisure and Special Needs

Blog #198~ Nick’s Adventures in Vail

Blog #198~Nick’s Adventures in Vail

Last week, Nick celebrated his 24th birthday in Vail, Colorado.  Nick has Down syndrome and autism, but this doesn’t limit his ability to enjoy life to its fullest.  My son loves the Disney movie, Snow Dogs.  We made reservations for a dog sledding tour with Mountain Mushers, located in Beaver Creek.  Upon our arrival, the dogs were loud and super excited.  They barked and howled expressing their eagerness to run.  Our guide and musher, Cameron led Nick to Sara, an affectionate dog that would be on our team.  Normally Nick gets shy around dogs but he took a liking to sweet Sara.

Nick, Cameron and Sara…..

Nick petting sara dog

The dogs are a mix of Alaskan Huskies, all happy, friendly and truly loved by the staff.  They were certainly ready to race, as they jumped with eagerness.

Here’s Nick and I, with his Dad posing briefly in the musher position, before we started the tour…..

Sled pic

Our musher, Cameron made sure Nick was comfortable.  Before takeoff, he yelled, “Hike” and the dogs took off quickly.  Nick loved it, as he is such a thrill seeker.  Anytime we ride on a rollercoaster and it ends, he always signs “more”.  So, I knew dog sledding would be right up his alley. Once the tour starts, the dogs quiet down and get into a rhythm.  At this point you hear their paws hitting the ground in unison, and the sound of the snow crunching under the runners.  Mountain Mushers runs the tour on private property, with many hills.  We flew up and up and down them, at a rapid pace.  On occasion we would hit bumps on the trail.  Nick loved that part, laughing and saying “Oh $h*t” each time 🙂

dogs in motion

There is something about being in the mountains amongst the Aspen and Pine trees, that is both peaceful and reverent.  The views are spectacular, and it was interesting to see the large bear claw marks scraping up several Aspen trees.  Halfway through the tour, the dogs get a rest.  The staff provided us with a treat of hot chocolate and homemade pumpkin bread.

dogs resting

One of the dogs on our team is blind, and he is paired with his brother, who helps to guide him.  Even though this dog couldn’t see, he was right in the mix.  Each time our musher called him by name, the blind dog leaped in the air kicking up one leg in elation.  It was an amazing experience that Nick and I will never forget.  He’s been watching the movie Snow Dogs everyday since.

Vail is beautiful, and the views are serene.  Nick enjoyed being with his aunt, uncle and our friends last week.  He got such a kick out of being in the hot tub, while snow flakes flew around us.  Nick smiled, blinking them off of his eyelashes as the blustery breeze gave us a jolt of coolness while we soaked in the steamy bubbles.

We celebrated Nick’s birthday with pasta and his favorite, chocolate cake!

Nick 24 Birthday cake

We wrapped up the week, with a trip to the Continental Divide at Tennessee Pass.  The resort overlooks the Sawatch Mountains, with many groomed trails to ski, hike and snow shoe, along with other Nordic adventures.  Our group took the one mile trail via snow shoeing, cross-country skiing or riding up in a snow mobile.

Nick totally loved riding up the hill, zoom-zoom……

snow mobile

At the top of the hill, we took in a spectacular view, watching the sunset with hues that painted a beautiful canvas in the sky…..

Continental Divide Sunset

Tennessee Pass provides a unique, fine dining experience inside a yurt.  A yurt is a circular domed tent of skins or felt stretched over a collapsible lattice framework and used by pastoral peoples of inner Asia.  The resort offers yurts both for dining and sleeping.  The yurt is rustic and toasty inside, with an exceptional four course dining menu.

Tennessee Pass Cookhouse Yurt……

Yurt

Dining in the yurt…..

After dinner, we took a fast pace ride down the one mile trail back to the Nordic center.  The stars and constellations shined vividly in the night sky.  Nick giggled with delight as we flew swiftly through the darkness, on the snow mobile.  It was peaceful and exhilarating all at once.

yurt at night

Our vacation and adventures in Vail were remarkable.  I feel blessed to have the opportunity for these unique experiences, and seeing the joy through Nick’s eyes.  That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

*Facebook and Pinterest @Down Syndrome With A Slice Of Autism

*Instagram #nickdsautism (I will be posting some video footage of our dog sledding experience, here this week).

*Twitter @tjunnerstall

 

 

Posted in Down syndrome, Feeding, Physical Therapy and Special Needs, Speech and Occupational Therapy

Blog #197~My son with Down syndrome, 24 years ago: What I learned

Blog #197~My son with Down syndrome 24 years ago: What I learned

Down syndrome journey

Birthdays are often a time to reflect back on our journey in life.  My son Nick, will be turning 24 years old next week.  I didn’t know until after he was born, that he had Down syndrome.  Honestly, I was more concerned for his health more than anything.  After a week in ICU, Nick was released.  The doctor told us to go home and love are baby.  He cautioned me that Nick might not be able to nurse properly and gain weight without having to use a feeding tube.  I thought to myself, “game on, challenge accepted”.  I rolled up my sleeves and got to work.  I hated all those wires that had been hooked up to him in ICU.  I certainly didn’t want any more hooked up to my son, moving forward.

The feeding tube never entered the equation.  Instead, what I found is that we had to work harder to be successful not only in feeding, but in reaching all developmental milestones.  Within 8 weeks, Nick started an Early Childhood Intervention (ECI) program.  Low muscle tone is a trait of having Down syndrome.  The physical, speech and occupational therapists along with his teacher provided strategies to help build strength and endurance.  More important, they gave us pragmatic ways to incorporate these at home in our daily routine.

Nick propped in high chair, supported with a bolster under his legs and pillows on the sides…..

Nick low tone high chair

That is how it all started 24 years ago, with Nick.  I’ve learned a few things while raising my son especially in the early years.  First, is that the developmental milestones take longer to hit, but each mark was met with hard work and persistence.  In addition, find the people and resources that will facilitate, motivate and help to modify your child’s environment to allow them to grow and flourish.  It’s important to keep your expectations high, just as you would with any other child.  But keep in mind, you have to be very patient, because it can take longer to roll over, crawl, walk and feed.  If you feel like your child is stalled in development, then look for other therapies and strategies to push them forward.  This was the case when Nick was a year old and unable to sit up on his own.  His core was so weak due to low muscle tone.  I made the decision to try equine (horseback) therapy which helped him immensely.  This brings me to one more lesson I learned.  Look at finding the RIGHT therapies and services, instead of just adding in more.  Each child is individual and motivated in different ways.

Nick doing horseback therapy in 1995…..

Nick horseback therapy

Consider a variety of strategies, such as infant massage, sensory integration, motor play with proper positioning, and oral motor exercises that can accelerate growth.  Keep in mind what interests your child has, and use those tools to build into play and daily routines at home.  Nick was very motivated by music and enjoyed oral motor activities like blowing and popping bubbles.  His physical therapist would have him sit on a small ball while blowing, tracking and popping bubbles.  Nursery rhymes and signing were also incorporated while sitting on the ball, which acted as a dynamic surface to build core strength.  Siblings can be great with play to stimulate movement and arousal for your baby.

Nick with his brother Hank……

Nick and Hank babies

The challenges associated with low muscle tone and Down syndrome can be met with hard work, persistence, and finding the right support and therapies that will facilitate building muscle strength and endurance for your child.  Early intervention will help to build a solid foundation which allows your child to become their best self.  Nick’s come a long way since the days where he was propped up with bolsters and pillows.  He is a strong, funny, helpful, mischievous and happy young man. Next week, we will be on vacation in Vail to ring in #24.  No blog next Monday, but you can catch Nick on social media. Happy Birthday to you Big Guy!

Nick in Key West, over the Christmas holidays 🙂 ….

Nick Key West

That’s what is in my noggin this week.

~Teresa 🙂

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Instagram #nickdsautism

Twitter @tjunnerstall