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

Blog #205~Post Mother’s Day Advice

Blog #205~Post Mother’s Day Advice

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

unplug it quote

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

*Are the current therapies and interventions effective?

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

*What type of activities can be incorporated at home?

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

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

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

nick folding washcloths

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

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

That’s what is in my noggin this week 🙂

~Teresa

Follow Nick on Social Media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

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

DS-ASD, Nick’s Spring Update

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

Blog #204~ Lessons Learned from the Last Lecture

Blog #204~Lessons Learned from the Last Lecture

Randy Pausch was a professor at Carnegie Mellon and author of the national bestselling book, The Last Lecture.  He encouraged his students to attempt hard things and not worry about failing.  He would give out “The First Penguin Award” to the team who took the biggest gamble trying new ideas and technology, but failed to achieve their goals.  “This award celebrated out-of-the-box thinking and using imagination in a daring way.”  The title of this award came from the way that penguins jump into the water that might contain predators.  Somebody has to be the gustsy, first penguin, and take a bold leap into the unknown.

fail spectacularly

The takeaway is this, it’s important to attempt hard things and  you can expect to hit brick walls.  That is when you gain experience.

“Experience is what you get when you didn’t get what you wanted.”

This quote struck me as I was reading The Last Lecture over the weekend.  My son Nick, was born and diagnosed with Down syndrome.  Years later, he recieved a secondary diagnsosis of autism.  I didn’t get the “normal child” that I expected.  My path raising Nick has been very different then I had planned.  But along the way, over the past twenty-four years I’ve gained a great amount of experience in navigating my son’s journey.

Randy Pausch, a computer science professor gave his last lecture after receiving a diagnosis of terminal cancer, leaving behind a wife and three young children.  His book, The Last Lecture, co-written with Jeffrey Zaslow is a summation of everything Randy believed with some valuable lessons in “overcoming obstacles, enabling others, and seizing every moment.

There are so many lessons offered by Pausch in The Last Lecture.  I want to share a few that resonated with me, as a parent of a child with special needs.  When my son, Nick was born twenty-four years ago, I made some choices on how I was going to manage life.  I was dealt a set of cards, that I didn’t expect.  But soon realized, that I would have to play the hand differently.  This meant getting support to help my son reach developmental milestones and creating a home environment that supported his growth.  I also learned to reach out to parents, therapists and teachers with experience to help me understand how to help my son become the best he could be.

Randy Pausch cards dealt with

Another valuable lesson is in the approach to life when facing adversity.  Randy says, “Make a decision, are you going to be a Tigger or an Eeyore?”  A.A. Milne’s beloved Winnie-the Pooh characters are in two different camps.  I’d choose fun-loving Tigger over grumpy Eeyore every time.  Optimism can take you much further in life!

Randy-Pausch-Pooh-Quote

Here are a few more nuggets of wisdom from Randy Pausch, and how they relate to being a parent of a child, with special needs.  I found these lessons to ring true, especially navigating a dual diagnosis of Down syndrome and autism:

“All you have is what you bring with you.”

I understand all too well the need to be prepared for whatever situation the day may bring with my son.  What do I need to bring and what should I anticipate?  This could be anything from an extra set of clothes, spare iPod, PECS book, AAC device, snacks, Kleenex, stim toys and more.  Identify possible trouble spots/ triggers for meltdowns/messess and come up with ways to avoid these incidences.  Also, have a contingency plan in case as Randy says, “All hell breaks loose”.”

“All you have to do is ask.”

Randy tells a story about his Dad wanting to ride in the nose cone with the driver on the monorail at Disney World.  His Dad assumed they didn’t let regular people ride up there.  Randy told his Dad he had a trick and asked if his Dad wanted to see it.  He walked up the driver and asked, and the driver said yes.  You never know unless you ask, and this is true from my experiences working with doctors, therapists, teachers and other IEP members.  Ask for IEP drafts before the meeting, and to be included in your child’s goal planning.  Ask that the parent concerns (that you’ve written ahead of time), be put directly in the IEP at the beginning of the meeting.  These concerns will be a part of what drives the IEP.  Ask the doctor for whatever your child might need for their health like, prescriptions for therapy, nutritional supplements, evaluations for orthotics and to get all test results as soon as they come in.

“Start by sitting together”

This is essential when going to your child’s IEP (Individual Eduction Plan) meetings.  Randy’s approach to working with a group of people is simple.  Lay all the cards face up on the table and say to the group, “Ok, what can we collectively make of this hand?”  He offers a few tips for a successful group meeting like having optimal meeting conditions (make sure no one is hungry, cold or tired).  I’ll add in cramped rooms with  small chairs, as this has happened to me in past IEP meetings. Randy also adds, to let everyone talk, check your egos at the door and praise each other.  Finally phrase alternatives as questions, so instead of saying, “I think we should do A and not B” try saying,  “What if we did A and not B”.  This allows the team members to offer comments rather than defend their choice.  It opens up the discussion to get input from the whole IEP team.

The lessons that Randy Pausch shares in his book, are valuable.  Here are my takeaways as they relate being a parent of a child with special needs:

*Don’t be afraid to think outside the box and try something daring.

*If you hit a brick wall, learn from it and gain more experience.

*You can’t change the cards that were dealt, but you can change how you play the hand.

*Your approach in playing that hand can be with a positive or negative attitude, it’s your choice.

*All you have to do is ask.  They might say sure, why not.

*Start by sitting together, when it comes to IEP’s the team should come together to be solution oriented, not problem oriented in collaboration approach.

Thank you Randy Pausch for the valuable lessons you shared in The Last Lecture and for the reminder to take what you have learned so that you can help others who might be starting down the same path.

And as you navigate your path always remember this…..

Randy Pausch spending time

  That’s what is in my noggin this week.

~Teresa 

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice of Autism

Instagram #nickdsatuism

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 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

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 🙂

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

Blog #196~Netflix Comedy Special “Disgraceful”

Blog #196~ Netflix Comedy Special “Disgraceful”

The Netflix comedy special, “Disgraceful” by Tom Segura has recently sparked outrage in the Down syndrome community.  The comedian, known for pushing the boundaries, talked about how you can’t use the words, “that is retarded” anymore.  In this act, he takes it a step further by suggesting that it be replaced with the term, “extra 21st chromosome,” directly mocking people with Down syndrome.  The words used in this program are wrong, offensive and by definition hate speech.  I wouldn’t be doing my job as Nick’s mother if I didn’t advocate for my son, and other individuals having Down syndrome.

To view the full transcript of this piece along with how the Down syndrome community and leading support groups are responding click here:

https://themighty.com/2018/01/tom-segura-retarded-down-syndrome-netflix/?utm_source=search&utm_medium=site&utm_term=Tom%20Segura%20Netflix

Netflix is promoting this special, “Disgraceful” by claiming this comedian “gives voice to the sordid thoughts you never say out loud”.  So it appears that these “sordid thoughts” about people having Down syndrome are fair game.  We live in a country where there is freedom of speech, and certainly comedians push boundaries all the time.  But it is extremely hurtful and offensive to make a joke at the expense of people like my son, and other individuals who have Down syndrome.

Change.org has a petition that calls for Netflix to:

*Remove the anti-down syndrome rhetoric from the show.

*Take the anti-disability sketch out of the trailer for the show.

*Issue a public apology for perpetuating hate speech and stereotype to the Down syndrome community.

take it down netflix

To sign the Change.org petition click here:

https://www.change.org/p/netflix-take-it-down-netflix

If you have a Netflix account you can also give “comedian” Tom Segura a thumbs down.

Using the R-word and mocking individuals who have Down syndrome is NOT funny, in fact it’s disgraceful.  That’s what is in my noggin this week.

~Teresa