Posted in Down syndrome, Down Syndrome Awareness, Resources for Special Needs

Blog #222~Dear Doctor,A Down Syndrome Diagnosis is a Hope Story

Blog #222~Dear Doctor, A Down Syndrome Diagnosis, is a Hope Story

What is the right way for a doctor to deliver the news that your baby has Down syndrome either pre-natal or at birth?  Over the weekend, I received a link from Nothing Down, called Dear Doctor http://www.nothingdown.org/ The short film link, interviewed parents who shared their experiences with their doctor.  The delivery of the news of a Down syndrome diagnosis was often cold, stoic, and grim.  In some cases, the doctors told the parents what their child couldn’t do, while others were offered the option to terminate the pregnancy.  So how should a doctor deliver the news to parents that their baby has Down syndrome? Educating medical professionals, communities, and advocating for inclusion and acceptance, are some of the goals during the month of October, which is Down Syndrome Awareness Month.  The more you understand Down syndrome, the less fear you will have about the navigating the challenges associated with the diagnosis.

DS-Awareness-Month

I’m excited to share a new program that is going to change the way many medical professionals will deliver a pre-natal or birth diagnosis of Down syndrome.  It’s called Hope Story!

Hope Story’s Mission:

“Hope Story exists to give support, encouragement and hope to parents whose child have received a Down syndrome diagnosis; to provide free resources to the medical community to help them deliver a Down syndrome diagnosis, and to find ways for parents of children born with Down syndrome to use their unique story to bring hope to others.”  

Hope Story Helps 3 Main Groups:

*Parents whose child received  a diagnosis of Down syndrome.

*Parents who have a child with a diagnosis of Down syndrome.

*Medical Professionals

Hope Story will be providing kits to advocates who will partner with medical professionals.  Hope Advocates will inform, educate and allow doctors to get to know someone with Down syndrome on a personal level.  Tools in the Hope kit contain valuable information on how to deliver a diagnosis of Down syndrome, and a preferred language guide to help talk about Down syndrome with dignity, respect and hope.  In addition, the Hope booklet addresses concerns a new parent may have about Down syndrome.  Other tools include welcome letters, announcements, business card and  training videos for Hope advocates.

For more information on Hope Story click here:   @https://hopestory.org/about/

I’m looking forward to being an advocate for Hope Story, and the opportunity to work with medical professionals on delivering a positive pre-natal or birth diagnosis of Down syndrome.  Giving hope to other families who have a child with Down syndrome, has been the fuel for my writing for many years.   One thing I wish someone would have told me 24 years ago, when my son, Nick was born is this:

DD are like comas

Babies and children with Down syndrome have to work harder with physical, occupational and speech therapy to hit developmental milestones, and yes it may take longer, but they will and it hit them, and it will be grand!

My son Nick, age 24 🙂

Nick Key West

As we close to the end of October and Down Syndrome Awareness Month, I feel optimistic about the future of  individuals with Down syndrome.  We are moving beyond awareness, to acceptance and inclusion in society.  The future looks much brighter, with more opportunities for individuals with Down syndrome.  I’ve highlighted many success stories all month in my blogs, and social media listed below.  Education and understanding about Down syndrome is the key, and Hope Story is taking charge to help medical professionals and parents.  When you have knowledge and hope, the fear subsides.

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

~Teresa

Follow Nick and view more about Hope Story and the Dear Doctor film on social media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

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

My Guest Blog~So Your Baby Has Down Syndrome

My Guest Blog~ So Your Baby Has Down Syndrome

Recently I was contacted by an associate editor at Social Work License Map, a guide to social work licensure that clarifies the steps needed to become a social worker in any state.  This social work site,  also focuses on specific social work advocacy. I am very excited to share that my website, “Down Syndrome With A Slice Of Autism” will be included here.  In addition, I did a guest blog spot which posted live last week.  The guest blog is entitled, “So Your Baby Has Down Syndrome.”  Just click below to view:

http://socialworklicensemap.com/guest-blog-so-your-baby-has-down-syndrome/

October is  Down syndrome Awareness Month and there are so many good stories in the news.  I will continue to post these on the Facebook page for you to enjoy.  Thank you for reading and sharing Nick’s world.  That’s what is in my noggin this week!

~Teresa 🙂

DSAwarenessMagnet

 

 

 

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

Blog #100~20 Tidbits about Nick

Blog #100~ 20 Tidbits about Nick

To celebrate the 100 milestone of this blog “Down Syndrome with a Slice of Autism,” I made a list of 20 things about my son Nick.

Nick 20 years ago, what a little kewpie doll…..

Nick baby

1. Nick was born the day after his Dad’s birthday.

2. Nick was in NICU and on oxygen for one week due to an AV valve in his heart not closing.  Fortunately, this closed up within a week.  He was released from the hospital on Valentine’s Day which was also Ash Wednesday.

Aqua heart

3. Nick started early intervention with speech, occupational and physical therapy at 8 weeks old. They taught him sign language. He worked on a stability ball to build core strength long before it became trendy.

4. Nick was the youngest child to start horseback riding therapy in the early intervention program at age one.

5. We use to prop up pillows on the sides of his high chair to keep him from flopping over to the side, until his core became stronger.

Nick high chair

6. Due to his low muscle tone (a trait of Down syndrome) he didn’t walk or eat solid foods until he was 3 ½ years old.  We did a co-treatment with extensive OT and speech therapy with a feeding specialist using the Debra Beckman feeding technique

7. Nick doesn’t like yogurt or applesauce because I’d mix this awful smelling and tasting Nutrivene Vitamin Supplement into them.

8. To get Nick to pull up to stand, his brother would bounce ping pong balls on the coffee table to catch his attention. I also hung several music toys over the fireplace so he had to pull up to his feet to hear the music. (Hmmmm, maybe that’s why he’s obsessed with pushing buttons.) 🙂

9. Nick has been to the top of the Eiffel Tower and Notre Dame Cathedral.

Nick Eiffel Tower

10. He has been overseas three times including London, France and Spain.

11. Nick can replicate exact sneezes, high and low pitch, big and small ones.

12. He is so flexible that he can sleep with his legs crossed and folded all the way forward.

13. Nick’s a thrill seeker and will sign “more” as soon as a roller coaster ride is over.

14. He hates to wear hat and gloves no matter how cold it is.

Nick sled

Unless he’s indoors :)……….

Nick Winter Ninja

15. Nick’s favorite actor is Eddie Murphy, in the movies The Nutty Professor, Doctor Doolittle, and Norbit.

16. He doesn’t like any fruit at all (except raspberries, that is giving and getting them). He does LOVE salads.

raspberry

17. He won a gold medal in the softball throw event at the Illinois State Special Olympics.

Nick Special Olympics

18. Nick was evaluated for autism at age 5, but didn’t get a formal diagnosis until he was 11 years old.

19. Nick has a thing for dolphins and beluga whales.

Nick Kiss

20. Before the 30 fire alarm pulls, Nick would grab car remote keys and set the alarms off.

Hope you enjoyed the 20 snippets about Nick.  Thank you so much for reading and sharing Nick’s world for the last 100 blogs.   That’s what is in my noggin this week. 🙂

~Teresa

20 Year Old Nick…..

photo (120)

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall