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

World Down Syndrome Day~ Rock Your Socks

funky-socks

World Down Syndrome Day~ Rock Your Socks

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

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

world-down-syndrome-day

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

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

nads-logo

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

warm-sock-photo

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

To ORDER your FUNKY SOCKS click here:  

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

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

~Teresa 🙂

Follow Nick:

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Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

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

Winter 2017 Update

Winter 2017 Update

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

Hot tub in February, no jacket required…..

nick-hot-tub-feb

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

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

nads-logo

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

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

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

nick-and-bro-x-mas

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

world-down-syndrome-day

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

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

funky-socks

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

nick-smiling

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

~Teresa

Follow Nick:

Down Syndrome With A Slice Of Autism on Facebook and Pinterest

#nickdsautism on Instagram

@tjunnerstall on Twitter

 

 

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

Blog #167~Brittany’s Baskets of Hope

brittany-baskets

Blog #167~Brittany’s Baskets of Hope

“Just because you are born with a disability, it doesn’t mean you can’t do everything you want to do!”   This is the message that a young entrepreneur, Brittany Schiavone wants to share with the world.  Brittany’s Baskets of Hope, Inc. is a non-profit organization which creates and delivers welcome baskets full of resources, love and hope to new Down syndrome families across the country.

brittanys-basket-contents

Brittany’s Baskets of Hope’s mission, is to celebrate and support families with a new baby with Down syndrome. “We want all newborns of every ability to know that they can do anything!”

Currently, this non-profit organization has sent baskets to over 175 families in 42 states across the country!   Brittany has spoken at schools, colleges, and conferences across Long Island.  Her work has been featured on FOXBusiness.com, The Mighty, Ditch the Label, Elephant Journal, and News 12 Long Island, where she was selected as one of the news channel’s “12 Making a Difference in 2016.”

100% of the funds raised go to supporting families who have a new baby with Down syndrome.  These donations are used to purchase items for the welcome baskets and to mail them to families.  Each basket is put together personally by her, and includes resources and a variety of baby items.  Brittany wants to spread the word, “That no matter who you are or how you’re born, you can lead a full, joyful life!”

If you would like to request a basket to be sent to a new family having a baby with Down syndrome or make a donation to Brittany’s Baskets of Hope, click here:

http://www.brittanysbasketsofhope.org

 You can follow and support this organization on Facebook, Instagram and Twitter as well!

brittanys-baskets-of-hope-logo

My son Nick, was born with Down syndrome.  After speneding a week in the hospital ICU, he was released on Valentine’s day, 23 years ago.  I was sent home with only a couple of brochures about Down syndrome ,and nothing more.  Looking back it would have been wonderful to receive such a gift and the reassurance from an adult having Down syndrome like her.  I applaud Brittany for her generosity, positive spirit, and commitment to help other families.  Her baskets are filled with resources and special baby gifts for new babies with Down syndrome and given freely with her love.  And most importantly, she sends with each family a strong message of hope.  That’s something a new parent receiving a recent diagnosis of Down syndrome needs the most.

That’s what is in my noggin this week.

~Teresa

Follow Nick on Facebook & Pinterest @Down Syndrome With A Slice Of Autism, Instragram #nickdsautism, and on Twitter @tjunnerstall

 

 

 

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……

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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.  🙂 

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