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

Blog #232~Online Links for Special Needs Parents

Blog #232~Online Links for Special Needs Parents

Support hands

This week, I’ve provided a list of online links, to support special needs parents. These links are for parents of individuals with Down syndrome, autism, a dual diagnosis of Down syndrome and autism (DS-ASD) and other intellectual and developmental disabilities:

Down syndrome support links:

Down syndrome awareness ribbon

http://www.ndss.org The National Down Syndrome Society is the national advocate for the value, acceptance and inclusion of people with Down syndrome.

http://www.ndsccenter.org The country’s oldest national organization for people with Down syndrome, their families and the professionals who work with them.

http://www.nads.org NADS is the National Association for Down syndrome and a solid support group in the Chicago area. There is also more links for dual diagnosis of Down syndrome and autism here (including a complete list with signs and symptoms for parents wondering if their child has more than just Down syndrome).

http://www.gigiplayhouse.org Down syndrome Awareness Centers all over the Midwest and expanding to New York, NY and Mexico. These centers provide play, fitness and social groups.

http://www.noahsdad.com Support and inspiration for parents who have a baby or child with Down syndrome. There is some great information and useful tips and links and positively focused. Noah’s Dad has also launched Hope Story to raise awareness and provide additional support.

https://hopestory.org Hope Story – Down Syndrome Diagnosis Support and Resources 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.

http://www.futureofdowns.com Run by parents of children with Down’s syndrome. Covers a wide range of topics regarding babies and children with Down’s syndrome, pregnant and in need of advice on screening and tests or have just received a positive diagnosis following an amnio or CVS.

Autism support links:

autism ribbon

http://www.facebook.com/autismdiscussionpage This page was developed by Bill Nason, MS, LLP to discuss tools that help children on the spectrum. This site provides solid information and strategies related to autism.

http://www.autismspeaks.org Autism Speaks provides information and advocacy and good general information and links.

http://www.autism-society.org The Autism Society improves the lives of all affected by autism through education, advocacy, services, research and support.

http://www.tacanow.org Talk About Curing Autism and has a ton of links and articles along with coffee groups.

http://www.myautismteam.com Online support group for parents to share daily trials, triumphs, questions and recommendations.

http://www.mayer-johnson.com Boardmaker software for assistive technology/AAC devices.

http://www.teeach.com Information on TEEACH materials

More links for special needs parents:

https://thearc.org The Arc: For People With Intellectual and Developmental- Information and referral services, individual advocacy to address education, employment, health care and other concerns, self-advocacy initiatives, residential support, family support, employment programs, leisure and recreational programs.

https://www.parentingspecialneeds.org Parenting Special Needs Magazine share information and inspiration for parents of children with special needs.

https://www.woodbinehouse.com/ Publisher of the Special-Needs Collection…books for parents, children, teachers, and other professionals.

http://www.pottytrainingsolutions.com Gathers the most common problems and their solutions to help take the stress out of this major milestone.

http://www.easterseals.com Easter Seals offers programs, training and equipment for families.

wwww.bridges4kids.org Great, practical resources for special needs families.

http://www.specialedadvocacy.org Advocacy site for parents and teachers

Down syndrome and autism links:

DS-ASD Ribbon

https://http://www.nickspecialneeds.com My site provides solid information on topics specific to a dual diagnosis of Down syndrome and autism (DS-ASD), including supports, communication and speech/feeding issues, occupational therapy, behavior/ ABA and much more.

http://www.ds-asd-connection.org Offers good information related to a dual diagnosis of Down syndrome and autism.

http://www.theupsideofdowns.org Provides support, advocacy and information specific to a dual diagnosis of Down syndrome and autism.

Facebook groups for DS-ASD There are several Facebook groups directly related to Down syndrome and autism. These groups are a safe place to share information, ask questions, and help each other. Visit my Facebook page- Down Syndrome With a Slice of Autism. You can also type in Down syndrome and autism into the search box to access additional groups.

Online support groups and links provide information, assistance, resources and encouragement, for parents who have a child with Down syndrome, autism, a dual diagnosis of Down syndrome and autism (DS-ASD) and other intellectual and developmental disabilities. As a parent, remember you don’t have to navigate the special needs path alone, help is out there!

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

Follow us 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, Recreation/Leisure and Special Needs

Blog #211~50 Years of Special Olympics

Blog #211~50 Years of Special Olympics

Special Olympics 50 years

“Let me win, but if I cannot win, let me be brave in the attempt.” 

This is the motto of the Special Olympics, encouraging athletes to find the courage to give it all you got.

“The torch was first lit on July 2, 1968 when Eunice Kennedy Shriver ushered in a new era for people with intellectual disabilities, when — with 1,000 athletes from three countries — she opened the very first Special Olympics International Games at Soldier Field in Chicago.”

Two weeks ago, the torch returned here to Soldier Field here in Chicago, where it all started.  Fifty years later, the games have become a global movement reaching more than 5 million athletes.  Sport events include track and field, basketball, bocce, cycling, figure skating, soccer, power lifting, gymnastics, judo, tennis, swimming, skiing and bowling to name a few.

“Special Olympics is an international organization dedicated to empowering individuals with intellectual disabilities to become physically fit, productive and respected members of society through sports training and competition.”

My son Nick has a dual diagnosis of Down syndrome and autism.  Over the years, he has participated in Special Olympics competing in track and field, bocce and bowling.  The spirit, camaraderie and dedication of volunteers made the experience very rewarding for Nick and our family.  Watching the determined athletes is awe-inspiring.

Nick competing in the 50 yard dash at North Central College….. 

Nick backside special olympics

Nick special olympics podium

Nick showing off his gold medal earned at bowling…..

Nick special olympics bowling

Nick taking a bow at the top of the podium as they played the olympic theme song.  He won the State Special Olympics gold medal for the softball throw competing in down state Illinois…..

Nick Special Olympics

Nick competing in Bocce with his volunteer peer partner, Bobby.  Incidentally, Bobby (who is Nick’s brother’s best friend), has since gone on to become a Special Education Teacher in the north suburbs of Chicago…..

Nick special olympics bocce     nick special olympics bocce two

As my son entered high school, we had to put Special Olympics on the shelf.  Having a dual diagnosis of Down syndrome and autism made it difficult for Nick to participate without having a 1:1 aide at all times. This just wasn’t feasible.  As a parent, you can only do so much for your child.  I made the decision to put speech and occupational therapy first, rather than Special Olympics practice events, after school.  However, there were other inclusion opportunities for him in high school, which included Peer Partners and community trips with his respite workers.  Nick also participated in a wide range of P.E. programs with peer volunteers to assist and encourage him in high school.

Special Olympics has impacted the lives of athletes and volunteers for 5 decades.  Eunice Kennedy Shriver’s vision has grown from a flicker of the first torch flame, to an international movement.  “Special Olympics is dedicated to use the power and joy of sports to impact inclusion and respect – one athlete, one volunteer, one doctor, one teacher at a time.”  Congratulations to Special Olympics for 50 years of making a difference in the lives of individuals with intellectual and developmental disabilities!

eunice_dennedy

That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #tjunnerstall

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, Fun Side of Nick, Recreation/Leisure and Special Needs

Blog #96~ Best Buddies Program

Blog #96~ Best Buddies Program

Spring is in the air!  I scrolled the Facebook wall over the weekend admiring all the beautiful gals dolled up in their prom dresses and the young men looking so handsome in tuxedos.  It’s a rite of passage for high school students, but one that my son Nick never had a chance to experience.  Nick has Down syndrome and autism and the prom just wasn’t in the cards for him.  But enter this awesome program called *Best Buddies. 

Students like Nick who have intellectual and developmental disabilities are often isolated and left out of traditional school activities.  That’s where the Best Buddies program comes in.

The Best Buddies program fosters one-to-one friendships between students with and without intellectual and developmental disabilities (IDD).  Best Buddies helps to create an inclusive school climate breaking thru social barriers at an important time in a young person’s life.  This non-profit organization is dedicated to establishing a global volunteer movement that creates one-to-one friendships, integrated employment and leadership for people with IDD.  Founded in 1989 by Anthony K. Shriver, Best Buddies has grown internationally from one school chapter to 1,700 middle schools, high schools and college chapters worldwide. Best Buddies has eight formal programs impacting 800,000 individuals both with and without intellectual and developmental disabilities worldwide.”

Best-Buddies-logo

How did Best Buddies impact Nick’s high school experience?  Because of Best Buddies, Nick was able to enjoy a wide variety of extra-curricular activities. Each month the group participated in meetings, community volunteering, parties, and social events such as bowling, going to the movies, out to eat and to local parks.  In addition, the group hosted two dances a year.

Nick volunteering at a Knights of Columbus  fundraiser……

Knights of Columbus

Nick heading to the Best Buddies Spring Dance……

best buddies dance

Nick looked forward to these events and being paired up with his peer partners.  I am very grateful for these students who volunteered their time to the Best Buddies program. Nick had a special connection with each of his peer partners. This program truly enriched his high school experience.  That’s what is in my noggin this week.

~Teresa 🙂

For more information on Best Buddies: http://www.bestbuddies.org