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

Blog #192~Down syndrome-Autism: Green Monday Gift Ideas

Blog #192~Down syndrome-Autism:Green Monday Gift Ideas

green-monday

It’s green Monday and just two weeks until Christmas.  Here are some gift ideas for individuals having Down syndrome (or a dual diagnosis of Down syndrome and autism, or other special needs) along with their caregivers, teachers/aids, and therapists.

http://papercloudsapparel.com/  Order T-shirts, hats and totes designed by artists with special needs

My son Nick, wearing a Paper Clouds Apparel shirt designed by Justin Lundeen…

nick fire truck shirt

https://www.riverbendgalleries.com/  Features the beautiful photography of artist, Geoffrey Mikol prints, framed art, calendars, coaster sets and greeting cards are available for purchase online….

Geoffrey Mikol picture    Geoffrey Mikol

http://specialsparkle.com Kelly is a young entrepreneur who has Down syndrome.  She designs and makes fashionable jewelry you can order online….

special sparkle jewelry

http://www.christianroyalpottery.com/pages/about  Beautiful pottery (bowls, platters, plates, jewelry) by Christian Royal…..

 

 

One of the best gifts is an iPad and there are countless apps for learning and play.  If you are looking for a sturdy case, the Go Talk Rugged and Big Grip cases have held up the best…..  

 

If your child has sensory needs, and likes to do a lot of dropping, check out these toys:

vortx-dropping-coins  marble racemagic-tracks-mega-set-360-piece--A817AA38.zoom

Gifts ideas in located in the archives, type this in the search box: Blog #131~Christmas Ideas for a Child With Special Needs…..

 

Gift ideas for babies and toddlers with Down syndrome: http://www.cedarsstory.com/?s=Best+Gift+Ideas

Noah’s Dad- Down syndrome Awareness Top 10 gifts for a 7 year old: http://noahsdad.com/7-year-old-gift-ideas/

Books for caregivers and families, here are a few suggestions and there are more listed in this Blog #144~ Inspiring Books Related to Down syndrome located in the archives……

 

Gifts book cover    Book An Uncomplicated Life  down syndrome and autism intersect

Please feel free to share this, and any of my blogs with others and on social media.  Also, check out my Pinterest page for more gift recommendations and other helpful information. Do you have any gift suggestions? I’m always looking for unique gift ideas related to Down syndrome and autism to post on my website.  Nick and I wish you all the best as you are preparing to enjoy the holiday season.

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 #181~Iceland and Down syndrome

Blog #181~Iceland and Down syndrome

Last week CBS News ran a story about Down syndrome in Iceland. The CBS report opens like this:
“With the rise of prenatal screening tests across Europe and the United States, the number of babies born with Down syndrome has significantly decreased, but few countries have come as close to eradicating Down syndrome births as Iceland.”

cbsn-oa-agusta

“On 14 August 2017, CBS News ran a segment for their program “CBSN: On Assignment” in which correspondent Elaine Quijano traveled to Iceland to report on that country’s disappearing incidence of Down syndrome. Since prenatal screening tests were introduced in Iceland in the early 2000s, the vast majority of women — close to 100 percent — who received a positive test for Down syndrome terminated their pregnancy.”

To view the story click here:
https://www.cbsnews.com/news/down-syndrome-iceland/

I’m going to throw my two cents in about this news story. This week’s blog is not a debate about a moral decision of whether to choose to have a baby with Down syndrome. It’s not my place to comment if someone decides to terminate a pregnancy for whatever reason.  I can only speak from own experience of having a child with Down syndrome. My son Nick is 23 years old and has Down syndrome and autism.

There are 3 comments that I would like to make regarding this news story:

*1. Expectant parents should first do their research first and get the facts. Doctors often know little about Down syndrome beyond their own medical experience. The delivery of news about the possibility of a baby having Down syndrome is often delivered grimly and with pity. This was the case in my son. I would like to see the medical community and society to become more educated on Down syndrome. When you know the facts, you can make an informed decision that is not based on fear.

Here are a few good places to get the facts about Down syndrome:
http://www.ndss.org/Down-Syndrome/Down-Syndrome-Facts/
http://www.ndsccenter.org/new-and-expectant-parents/
*2. Down syndrome in and of itself, is nothing to fear. Yes, there are health issues associated with Down syndrome. Click here to view: http://www.ndss.org/Resources/Health-Care/Associated-Conditions/

A baby with Down syndrome may take a little longer to reach developmental milestones. But, with early intervention with physical, occupational and speech therapy can guide a baby/child with Down syndrome to hit those marks.  Sometimes, we fear what we don’t know or understand.  When you get educated about the facts, it will help to reduce the fear.

*3. Society needs to see more of what Down syndrome looks like. Persons with Down syndrome are people first! “The Emmy winning A&E show, Born this Way follows a group of seven young adults born with Down syndrome as they pursue their passions and lifelong dreams, explore friendships, romantic relationships and work, all while defying society’s expectations.”  I wish the whole world could have access to this great show! Click here for more information: http://www.aetv.com/shows/born-this-way

btway

Another excellent site I highly recommend is Noah’s Dad!  I’ve had the extreme pleasure of following Noah’s Dad and his journey with his son, who in entering first grade this year. He gives us a view of how full, and rich their lives are having Noah in it. You can find Noah’s Dad-Down Syndrome Awareness on Facebook and at http://noahsdad.com/

You can also follow my son, Nick on Facebook and Pinterest @Down Syndrome With A Slice of Autism, Instagram @nickdsautism and Twitter #tjunnerstall

Nick scuba diving in the Diveheart program……

Diveheart 2013 336

Down syndrome is nothing to be feared once you know the facts, and see what the lives of these wonderful individuals are like. It has been a true privilege being Nick’s mom. He has taught me more about life, and made me a much better person in the process. I couldn’t imagine a world without people like Nick and others, who have Down syndrome.  I’m 100% sure that anyone who has been touched by Nick, would say the same.

scan0016

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

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

Blog #147~A Father’s Perspective on Special Needs

Blog #147~A Father’s Perspective on Special Needs

Father’s Day is Sunday, June 19th!  As I did for Mother’s Day (Blog #144), this week features books written by fathers who have children with special needs.  My son Nick is 22 years old, he has Down syndrome and autism.  I am always searching for new information and gaining different perspectives.  If you are looking for a male/father perspective check out the book list below.  In addition, here are two dads that I recommend  following on Facebook.  Their websites are also included:

“Noah’s Dad” (Noah is 5 years old and has Down syndrome) http://www.noahsdad.com

“Autism Daddy” (Kyle aka “The King” is 12 years old and has severe autism and is nonverbal).  http://www.theautismdaddy.com. 

Books written by fathers who have children with special needs:

Austin, Paul: Beautiful Eyes: A Father Transformed (W.W. Norton, 2014).  A father reflects on his journey with his daughter with Down syndrome, beginning with her birth and ending with her life as a young adult living in a group home.

Daugerty, Paul: An Uncomplicated Life: A Father’s Memoir of His Exceptional Daughter (Harper Collins, 2015).  A father celebrates his daughter’s accomplishments, from childhood through college and impending marriage, and the joy she has brought to her family and those around her.

Book An Uncomplicated Life

Estreich, George:  The Shape of the Eye: Down Syndrome, Family and the Stories We Inherit (Southern Methodist University Press, 2011).  A poet reflects on the many influences of family after the birth of his daughter with Down syndrome.

Palmer, Greg: Adventures in the Mainstream: Coming of Age with Down Syndrome 2nd Edition (Bennett and Hastings Publishing, 2012).  Palmer’s memoir about his son’s transition from high school to the world of work, now updated with reflections on their family’s experiences since the original edition was first released.

Sagmiller, G.: Dakota’s Pride the Book: One Father’s Search for the Truth about Down Syndrome (The Gifted Learning Project, 2014). The book version of the documentary featuring questions and answers with professionals and parents of children with Down syndrome.

Taddei, S.R.: Room 47: Down Syndrome-A New Father’s Diary (Viera Press, 2012).  A father publishes reflections about his daughter with Down syndrome drawn from the journals he kept during her first year.

Thank you National Association for Down Syndrome (NADS) http://www.nads.org for the book list!

I hope these resources provide insight and inspiration from a father’s perspective. Cheers to you, Dads!  That’s what is in my noggin this week!

~Teresa

Nick and his Dad at Hawk’s Cay Resort….

Nick Kiss

Follow Nick:

Facebook @Down Syndrome With A Slice Of Autism

pintrest@Down Syndrome With A Slice Of Autism

instagram-logo#nickdsautism

 

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

Blog #84~ Resource Links Related to Down syndrome and Autism

Blog #84~ Resource Links Related to Down syndrome and Autism

Today is President’s Day, so there is no school.  My ability to focus and write is hindered by interruptions from Nick who is making loud mooing noises, pushing the fan button on the microwave, dropping things behind the TV and watching “The Other Guys” while tapping a can of tennis balls against his mouth.  Yes, that’s a slice of  Down syndrome and autism here this morning………

Nick tennis balls

So this week I’ve included my favorite resource links related to Down syndrome and autism:

Down syndrome links:

DSAwarenessMagnet

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

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

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). 

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.

www.noahsdad.com   This site is invaluable for parents who have a baby or child with Down syndrome. There is some great information and useful tips and links and positively focused.  It is one of my favorite websites.

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 Links:

autism ribbon

www.facebook.com/autismdiscussionpage  This page was developed by Bill Nason, MS, LLP to discuss tools that help children on the spectrum. This is one of my favorite links related to autism.

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

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

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

www.brianraymondking.com  Brian King teaches his proven methods to individuals and their parents across the country in a private one-on-one format using the latest technology. He  writes a variety of articles, is an author, speaker and trainer  for schools, parents and support groups.

www.bridges4kids.org  Great resources for special needs families. One of my favorite go to sites.

www.myautismteam.com Parents share daily trials, triumphs, questions and recommendations

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

www.teeach.com  Information on TEEACH materials

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

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

www.specialedadvocacy.org  Advocacy site for parents and teachers

Down syndrome and autism links:

down syndrome and autism intersect

www.nickspecialneeds.com My site which provides information on topics specific to a dual diagnosis of Down syndrome and autism including supports, communication and speech/feeding issues, occupational therapy, behavior/ ABA and much more.

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

www.theupsideofdowns.org  Provides support, advocacy and information specific to Down syndrome and autism.

In addition, let me add that there are several Facebook groups directly related to Down syndrome and autism.  These groups are a safe place to share information, ask questions, and share the crazy things that our kids with a dual diagnosis do.  No one in these FB groups would  bat an eye if you posted a picture like this……… (In fact they would hit the like button and add in their own pictures in)…….

photo (20)

There is help out there right at your finger tips.  Let me know if you have any more to add in.  Thank you for reading and sharing my blog. Now, it’s time to gather up the contents of my purse that Nick decided to dump all over the living room floor.  That’s what is in my noggin this week! 🙂

~Teresa

Posted in Down syndrome

Blog #71~Down Syndrome Diagnosis…Have No Fear

Blog #71~ Down Syndrome Diagnosis….Have No Fear

October as everyone knows is Breast Cancer Awareness month.  It is also Down Syndrome Awareness Month.  Last year in Blog #26, located in the October 2012 archives, I did a full piece on Down syndrome awareness. Click here to check it out:  https://nickspecialneeds.wordpress.com/2012/10/15/blog-26-down-s…wareness-

This year I am taking a different route.  What happens to a parent when they find out that their child may have Down syndrome?  One feeling that evokes the mind immediately is fear.  The unknown tends arouse worry and anxiety.  Nineteen years ago when my son Nick was born the doctor told us he had several markers that suggested he might have Down syndrome.  Three days later, the chromosome test came back to confirm he did.  In 1994, there were no laptops or smart phones to quickly Google “Down syndrome” and great websites like http://noahsdad.com to ease my worries.   I was handed two brochures by the hospital administrator, that’s it.  There were so many questions in my mind.  How was my life going to change?  What would my son’s life look like?  I wonder what that crystal ball would have revealed?

crystal ball

Here are 5 things that I wish that crystal ball could have illuminated about having a child who has Down syndrome……….

1.  Don’t worry about giving up your life.  You will still be able to work, go out with your friends and take your son with you everywhere, even overseas vacations.

Nick Kiss

2.  You will meet many people who will show you how to navigate this new path and teach you about courage along the way. They will be educators, therapists, specialists, advocates and other parents who will light the lanterns and guide you and help your son learn and grow.

3.  Trust that all those milestones you are worried about like eating, talking, sitting up, crawling, walking and toileting will be met. Yes, eventually he will make it out of Pull-ups and Depends though this may test your limits. 🙂 Hitting these milestones may take a lot more time but when he does it will be glorious and sweetly savored.

extra chromosome extra cute

4.  Your son will teach you what pure, unconditional love is.  He will wake you up with a light in his eyes each morning. He will share a great sense of humor that will warm your heart and the hearts of many.

006

5.  One day your son will make you proud because he will be eager to work hard.  He will take great pride in the jobs he does both around the house and in the community. Unlike most of us he will enjoy vacuuming, laundry and unloading the dishwasher. 🙂  Yes, there will be some things he may not be able to do. But other times he will surprise you.  Just be patient and let God take him down the path that fits him.

Nick vacumming_Tabor Hills (3)

Those are the 5 things I wish that I’d known when faced with the diagnosis of my child having Down syndrome.   So, I tap all the moms on the shoulder that might be dealing with the birth of a child who has Down syndrome and say this…. “It’s going to be okay, relax and have no fear.”

keep calm extra chromosome

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

~Teresa

Posted in Autism, Down syndrome, Feeding, Personal Hygiene, Toileting

Blog #67~Dear Abby, Down syndrome and Autism Style

Blog #67~ Dear Abby, Down syndrome and Autism Style…

Dear Abby

Advice Columnist, Dear Abby 🙂

It’s comforting to know that as a parent of a child who has Down syndrome and autism I can click the mouse and find support online. When Nick was born 19 years ago, a nurse handed me a couple of brochures on Down syndrome.  That was it!   This is the vision sustained me after hearing of Nick’s diagnosis of Down syndrome. Thank you, Chris Burke…..Actor, advocate, icon, my rock star!

Chris Burke

Ten years later we would meet Chris in person at the National Down Syndrome Congress convention.  (For more information: http:// www. ndsccenter.org)

My older son, Hank with Chris Burke at the NDSC  Convention……

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There are several groups that I belong to on Facebook. (Just type in “Down syndrome and autism” in the search engine.) These parents are going through many adversities trying to get through the day and night with their kids.  Most are sleep deprived because their children are up all night turning on lights stimming, banging things against the wall, and opening and slamming doors.  I dedicate this week’s blog to these brave warriors who get up weary, reaching for the Visine and Advil to take on another day.

autism and sleep cartoon

Down syndrome and autism support groups are a safe haven to share war stories, tips, get advice, commiserate and laugh.  No one flinches when a parent writes about a walk on the local nature trail, and stopping to go back to their dawdling child.  The 11 year old stood there having just pooped in the middle of the path. What can I say but, it happens.   Topics last week were varied.  One mom needed help on how to explain and guide her daughter about getting her period.  I added a comment about a great book that tackles puberty and body privacy issues called:  “Taking Care of Myself,” by Mary Wrobel.  There were dozens of helpful tips from other parents who had daughters that had dealt with this issue.  Another parent had just given birth to a baby who has Down syndrome.  I was moved by all the support given to this new mom. Here are just a few of the many offered to her:

  • “Go home and bond and love your baby”
  • “Congratulations you have been blessed.”
  • “Get regular checkups and a heart echogram to rule out heart defects.”
  • “Low muscle tone may make it difficult to nurse your child but don’t give up.”
  • “Focus on the baby, not the Down syndrome.”
  • “Go to www.noahsdad.com it has great information presented positively.”
  • “Check out www.futureofdowns.com it has a lot of good information.”

It’s good to know that the struggles of feeding, toileting, hygiene, sleeping, sensory, gross and fine motor issues are felt by so many parents.   For a long time I was alone.  I pulled away from the Down syndrome support groups because I didn’t fit in.  Nick didn’t progress like the kids who just had Down syndrome.  After Nick’s diagnosis of autism I reached out to the Chicago based group, National Down Syndrome Association: http://www.nads.org.  Within NADS, there is a group is called “More than just Down syndrome.”  I found a new home here.  We have a unique bond because these parents get it!

We’ve have been through it all with Nick.  Our days are far from perfect. He still wakes up some nights but at least he isn’t banging the walls or turning on all the lights.  But some things have become easier as he has matured into an adult.  Just yesterday we gave him the best, most cooperative haircut ever!  Miracles do happen. 🙂

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As I wrote about in Blog #66, reaching out to a support group has helped me realize that I am not alone on this path. I’m not the only one who has bent down and had to clean up my child’s poop.  Bless these warrior parents for getting up and fighting the good fight!  That’s what is in my noggin this week!

~Teresa

Posted in Down syndrome

Blog #26~ Down Syndrome Awareness Month!

Down syndrome awareness month

Blog #26~ October is Down Syndrome Awareness Month!

Each October everything turns pink for breast cancer awareness.  Even the NFL players and referees wear pink.  Everything is illuminated including the Tower of London, The White House, Eiffel Tower, Empire State Building and even Rio’s iconic Christ the Redeemer statue is glowing pink.

But did you know that October is also Down syndrome Awareness Month? How much do you know about Down syndrome? Here are a few facts about Down syndrome courtesy of The National Down Syndrome Society (NDSS):

  • Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
  • There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4% and mosaicism accounts for about 1%.
  • Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.
  • There are more than 400,000 people living with Down syndrome in the United States.
  • Down syndrome occurs in people of all races and economic levels.
  • The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.
  • People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
  • A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.
  • Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today.
  • People with Down syndrome attend school, work and participate in decisions that affect them, and contribute to society in many wonderful ways.
  • All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
  • Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.

My boys, Hank and Nick 🙂

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Since this is about awareness, it is important to educate people on the appropriate language that should be used.  People with Down syndrome should always be referred to as people first. Do not say- “a Down syndrome child.” Instead say, “a child with Down syndrome.”  Here are three more improper phrases to avoid are “Down’s child” and describing the condition as “Down’s,” as in, “He has Down’s.”  Finally it should be said “Down” and not “Down’s.”  Down syndrome is named for the English physician John Langdon Down, who characterized the condition, but did not have it.

Down syndrome keep calm

Here are some great links promoting Down syndrome:

* NDSS Buddy Walks take place all over the country raising over 11 million to support local and national programs.

*Times Square jumbotron kicks off with a special Down syndrome awareness video.  Their website is at www.ndss.org.

*The National Down Syndrome Congress (NDSC) sponsors their campaign called, “More Alike than Different.”  Check out their website at www.ndsccenter.org.

*Here in the Chicagoland area, the National Association for Down Syndrome (NADS) provides bookmarks and posters that can be distributed in the community to schools, libraries, book stores and businesses.  This group is based in Chicago.  For more information go to  www.nads.org.

*GiGi’s Playhouse is another wonderful group that started in the suburbs of Chicago and has grown to expand around the country. GiGi’s Playhouses are Down syndrome awareness and educational centers that provide resources, specialized teaching, and support to individuals with Down syndrome, their families and the community.  They have a wonderful calendar and notecards available for purchase. More information is at www.gigisplayhouse.org.

*One of my favorite websites is www.noahsdad.com.  Noah is the cutest thing and his dad does a superior job of presenting his son in a positive light.

I hope this week provided some further insight and information about Down syndrome.  That’s what is in my noggin this week.  Most of us have been affected with or by breast cancer in some way.  I hope this month raises awareness and more funding for breast cancer and Down syndrome.  I would love to hear how a person with Down syndrome has touched your life.

My son, Nick rocks that extra chromosome! 🙂

best buddies dance

~Teresa 🙂