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 Uncategorized

Blog #158~Down Syndrome Awareness Month

Blog #158~Down Syndrome Awareness Month

Down syndrome awareness month

October is Down Syndrome Awareness Month.   This month, I want to share some information and educate the public about Down syndrome.

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.

Down syndrome journey

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 baby or child.”

*”Down’s baby or child”

*”Down’s”

*”He has Downs”

Instead say: “A child with Down syndrome”.  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.  Global Down Syndrome.org mentions that,  “Originally, it was referred to as his syndrome – Down’s Syndrome.  In the UK, Europe and many other countries, the correct term still remains “Down’s Syndrome.” In the U.S., it was changed to Down syndrome (drop the possessive) as to emphasize that it was not Dr. Down who had the syndrome nor was it his”.

My son Nick is 22 years old, and has Down syndrome and autism.  I’ve heard all of these incorrect phrases over the years. Please help me educate the public on the proper way to refer to a person with Down syndrome.  Thank you for reading and spreading awareness about Down syndrome.  That’s what is in my noggin this week.

~Teresa 

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Posted in Augmentative and Alternative Communication (AAC), Autism, Behavior/ ABA, Dual Diagnosis Down syndrome and autism, Uncategorized

Blog #155~More Than Just Down Syndrome

Blog #155~More Than Just Down Syndrome

There came a point when I felt like we didn’t fit in with the Down syndrome support groups. We stopped going to holiday parties, play groups and other fundraising events. My son, Nick lacked speech, displayed unusual and repetitive behaviors (like tapping and shaking objects along with making loud noises).  His speech delays resulted in frustration on his part, which led to behavior problems and violent meltdowns.  It became apparent that this was more than just Down syndrome, when he hit puberty.

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We approached the school team about these outbursts, where he would throw things, trash the classroom along with pinching and scratching staff.  It didn’t seem like any of us (both at school and home), could get a handle these problems.  The school was reluctant about getting an autism evaluation done, as they stated; “We have a primary diagnosis of Down syndrome we can work from”.  Rather than push the matter, we chose to have an independent evaluation done and paid for it (with some help from our private insurance), out of pocket.

It was money well spent. Nick got the diagnosis of Down syndrome and autism (DS-ASD).  If you suspect that your child’s behaviors are more than just Down syndrome, I would strongly suggest getting a medical evaluation done by a clinician.  The diagnosis of autism, was like getting the magic key, that unlocked the door to more services for our son. These services were provided in part, by the school district and outside agencies:

*Behavior intervention by the school district, autism specialist resulting in a Functional Behavior Analysis (FBA).  This lead to the development of a behavior plan, specifically targeting all triggers, and how to prevent & handle crisis situations during meltdowns.

*Speech support and training using a Picture Exchange System (PECS), along with an Alternative Augmentative Communication (AAC) device.

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*Toilet Training and workshops for home support.

*Additional State Funding (In-Home Family Support Child Based Waiver) which funds respite care, behavior support and safety/ health equipment to support the child at home.

*Federal Funding (Supplemental Security Income-SSI)

The formal, dual diagnosis of Down syndrome and autism (DS/ASD), helped professionals, family and friends get a better understanding of Nick’s behaviors.  By getting access to these additional supports, we were able to change the strategies needed to help Nick navigate his world.  His communication improved, allowing him to feel appreciated, understood and less frustrated.  As a family, we felt better assisted with the autism training and having respite staff take some of the burden off us.

If you would like more information on dual diagnosis of Down syndrome and autism check out these resources:

*When Down Syndrome and Autism Intersect-A Guide to DS/ASD for Parents and Professionals:

down-syndrome-and-autism-intersect

*The Kennedy Krieger Institute- https://www.kennedykrieger.org

*Down Syndrome Association (UK)- http://www.downs-syndrome.org.uk/for-families-and-careres/dual-diagnosis/

*National Association for Down Syndrome (NADS)http://www.nads.org/resources/down-syndrome-and-autism/

In addition, there are many support groups on Facebook when you type in Down syndrome and autism in the search engine, (including my Facebook page- Down Syndrome With A Slice Of Autism)For behavior support, the Facebook page-Autism Discussion Page (Bill Nason).

The challenges of having a child with Down syndrome and autism are unique.  So many parents say that they no longer fit in with the Down syndrome support groups and can’t relate to the autism groups either; they feel isolated.  You as the parent, know your child best.  If you suspect that your child has more than just Down syndrome, take action to get a clinical, medical evaluation and find the additional support to help your child.

That’s what is in my noggin this week.

~Teresa

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Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Fun Side of Nick, Uncategorized

Blog #149~Vacation/Staycation

Blog #149~Vacation/Staycation

How’s your summer going?  Nick had a blast on vacation in Texas, and a staycation here with his cousins. My son Nick is 22 years old and has Down syndrome and autism. We flew down to Texas late June, for a family reunion in the Hill Country.  I managed to knock a few things off my Texas bucket list including Tex-Mex food, tubing, swimming and authentic BBQ.

Nick enjoying the pool with his cousins, Jake and Jenna….

Nick Hill Country pool

A plate of Texas heaven….

BBQ

It was great to see extended family, share laughs, stories, meals, elbow bumps, and get those awesome Overbey family hugs!  Thanks Laura and Scott for hosting a wonderful event.

Texas sunset

We enjoyed a nice 4th of July, and Nick certainly got into the patriotic spirit. I don’t know where he comes up with these things……

Nick flags

Following the 4th of July, my niece and nephew came up for a week.  We had a lot of fun taking them out and spoiling them. They knocked a few things off their Chicago bucket list:

* Chicago White Sox game

*Taste of Chicago

*Millennium Park “The Bean”

bean

* Giordano’s deep dish pizza

giordanos01

*Portillo’s Italian Beef

*Blain’s Farm and Fleet (not sure that was on the list, but a good laugh between me and Jenna)

Thank you to our respite workers, (Jodi, Kelsey and Lara) for taking Nick out during our staycation. It was fun enjoying Chicago with the kids, and just hanging out (and being the cool aunt).

Elbow Bumps….

Nick and Jenna

So, that’s our summer thus far.  On another note, I’m excited to share a great opportunity with you.  Recently I was approached to be in a partnership with A&E’s hit show, Born This Way!  This series features young adults who have Down syndrome showing everyone the possibilities.  I got an exclusive interview you won’t want to miss. Look for the blog post later this week.  Check the social media sites below  for more information, including a look at the trailer.  Let’s get the word out, and share this on your social media as well.

A&E’s Born This Way premieres next Tuesday, July 26th at 10/9c!

BTW FB creative.jpg

What a great summer, it’s been.  See you in a few days with my exclusive Born This Way interview! That’s what is in my noggin this week.

~Teresa

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Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Uncategorized

Nick Update

Nick Update

Nick flag

Vacation in Texas and the 4th of July were a lot of fun.  Nick’s cousins have been visiting us for the past week.  We’ve had a blast and look forward to sharing all about it next Monday.  Want to know more about Nick’s world, Down syndrome and autism?  There are a variety of categories located on the right side, below the archives  including:

Adult Day Programs for Special Needs

Augmentative and Alternative Communication (AAC)

Autism

Autism Safety and Wandering

Behavior/ABA

Down syndrome

Dual Diagnosis Down syndrome and autism

Education and Special Needs

Feeding, Personal Hygiene, Toileting

Fun Side of Nick

Government/Legal Matters Related to Special Needs

Health Issues and Special Needs

IEP’s

Parenting Special Needs

Physical Therapy and Special Needs

Recreation/Leisure and Special Needs

Resources for Special Needs

Speech and Occupational Therapy

Tech Stuff/Apps and Video Based Instruction

Toileting

We have daily updates on our social media sites below. Have a great week and see you next Monday with more of Nick’s world!

~Teresa and Nick

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Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Uncategorized

Summer Break

summer_break

Summer Break

Family vacation time in Texas with lots of fun, sun and elbow bumps. Need a Nick fix?  Scroll down to the archives, there are a ton of stories on a variety of topics.   I’d love to know what your favorite stories are!

Check out our Facebook page “Down Syndrome With A Slice of Autism” and follow us on Instagram #nickdsautism.  Get the latest updates and Nick pics posted daily.

Cheers,

Teresa

 

 

Posted in Autism, Down syndrome, Resources for Special Needs, Uncategorized

Blog #144~Inspiring Books Related to Down Syndrome

Blog #144~Inspiring Books Related to Down Syndrome

As Mother’s Day approaches, I wanted to highlight a few more books.  These books would make a nice gift for a mom who has a child with Down syndrome.  My son Nick is 22 years old and has Down syndrome and autism.  It’s been quite a journey, one that I’ve been writing about for several years.  Here are a few books highlighted in this month’s newsletter from the National Association for Down Syndrome (NADS) www.nads.org.  Thank you NADS for the great list!  I also added in a couple of more that I found on Amazon:

Adams, Rachel, Raising Henry (Yale University Press, 2013).  A Columbia University professor reflects on raising her son with Down syndrome, on genetic testing and on the paradoxical role of disability in our culture.

Becker, Amy Julia, A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny (Bethany House Publishers, 2011).  The Princeton Theological Seminary graduate explores the changes in her life and faith after the birth of her daughter with Down syndrome.

Groeberg, Jennifer Graf, Road Map to Holland: How I found My Way Through My Son’s First Two Years With Down Syndrome (NAL Trade 2008).  A mother describes the period after her son’s birth.

Hale, Natalie, Down Syndrome Parenting 101: Must-Have Advice for Making Your Life Easier (Woodbine House, 2011).  Practical, uplifting advice covering important issues associated with Down syndrome.

Hampton, Kelle, Bloom: Finding Beauty in the Unexpected-A Memoir (William Morrow, 2012).  A popular blogger (Enjoying the Small Things) reflects on the changes in her life after the birth of her daughter with Down syndrome.

Lee, Marjorie Sullivan, Bloom where you are Planted (Tau-Publishing, 2012).   The story of her son Kevin, and how their lives were transformed becoming advocates for over four decades.

Murray, Kathleen PhD, Count It All Joy (Westbow Press 2015). A mother’s journey including lessons learned from her son with Down syndrome.

Silverman, Amy, My Heart Can’t Believe It: A Story of Science, Love and Down Syndrome (Woodbine House 2016).  Journalist, blogger and NPR contributor Amy Silverman recounts the impact on her life of the birth of her daughter Sophie, and the gradual evolution of her attitudes about Down syndrome.

Soper, Kathryn, The Year My Son and I Were Born (GPP Life 2010).  A memoir which records the author’s experiences after the birth of her son with Down syndrome.

Soper, Kathryn Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives (Woodbine House, 2007). A collection of personal stories, sixty-three mothers describe the gifts of respect, strength, delight, perspective, and love, which their child with Down syndrome has brought into their lives.

Gifts book cover

Soper, Kathryn Gifts 2 How People With Down Syndrome Enrich the World (Woodbine House, 2009).  The follow-up to the bestselling first volume, Gifts 2 presents a broader perspective on Down syndrome and life by including passionate stories by siblings, grandparents, cousins, aunts and uncles, as well as mothers of older children. Friends, teachers, medical professionals, and coaches also share the joys of knowing and caring for someone with Down syndrome.

The power of a book can give you inspiration and hope.  Back in 1994, when Nick was just a few months old, I found that book.  Count Us In: Growing Up with Down Syndrome (A Harvest Book) was written by two young men, Jason Kingsley and Mitchell Levitz. I clung to every word. They shared their innermost thoughts, feelings, hopes, and dreams, their lifelong friendship—and their experiences growing up with Down syndrome.  The book is smart, charming, witty and truly shows their full potential. Thank you Jason and Mitchell!

In the current addition, the authors discuss their lives since then—milestones and challenges, developments expected and unexpected—in a new afterword….

Count Us In

Please feel free to share this book list and any of my blogs.  I write to raise awareness, and more important to offer hope and encouragement.  Next month, I will highlight books written by fathers!  That’s what is in my noggin this week.

~Teresa

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

Blog #141~Managing Stress as a Special Needs Parent

Blog #141~Managing Stress as a Special Needs Parent

Let’s face it, parenting is stressful.  Being a parent of a special needs child adds even more stress.  It’s a constant state of being on call 24/7, 365 days of the year.  I have been in this state for 22 years with my son Nick, who has Down syndrome and autism.

This weekend, we attended the National Association for Down Syndrome (NADS) retreat.  It is an opportunity for Nick to have fun swimming, playing and doing music therapy.  We’ve been going to this twice a year for the past 11 years.  It is a great group of folks who get it.  You see we don’t fit in to either the Down syndrome support groups or the autism groups.  But at this retreat, we all can openly discuss the unique problems of raising a child with a dual diagnosis of Down syndrome and autism, in addition to  behaviors associated with ADD,ADHD and more.

Nick 2 (2)

At the NADS Down Syndrome and More retreat http://www.nads.org/, Dr. Louis Weiss did a presentation for the parents about taking care of yourself.

He identified areas in our lives that we nurture or neglect:

*Health (mental/physical)

*Relationships (partner, kids, family, friends)

*Work

*Play

Dr. Weiss emphasized the importance of finding your oasis.  How do you recharge your batteries?  What do you do to relax?

relax frog

It is critical to avoid the traps of maladaptive coping for stress with such things as excessive use of drugs/alcohol, sleeping, overeating, withdrawing/avoiding, becoming over-controlling or compulsive (too much screen time or games like candy crush).

Instead, use adaptive coping strategies to restore calm, get centered and refuel.

relax

Adaptive Coping Strategies:

*Mindfulness Practice

*Meditation

*Prayer

*Exercise, eat well, get enough sleep

*Journaling

*Hobbies (gardening, reading, sports, knitting,etc)

*Use organizing techniques for schedules, tasks, etc.

*Support groups (both in person and online)

*Utilize community resources

*Delegate responsibilities and rebalancing the division of tasks

*Setting limits and sticking to them

*Asking for help. Identify sources of support, including professionals.

Taking care of yourself means taking time for you, and doing so without guilt.  Just like the flight attendants demonstrate, put that oxygen mask on yourself first before you place the one on your child.  And you will both breathe a little easier.

oxygen mask

That’s what is in my noggin this week.

~Teresa

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Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Uncategorized

Blog #140~Home Chores and Your Special Needs Child

Blog #140~Home Chores and Your Special Needs Child

I was doing a little spring cleaning the other day.  I ran across a nice checklist of housekeeping activities to foster independence and build confidence.  My son, Nick is 22 years old and has Down syndrome and autism.  He takes great pride in doing his chores around the house.

Nick watering plants

One of Nick’s strengths is remembering where things go.  He does a great job unloading the dishwasher and putting the dishes away.  Other jobs he has are recycling, emptying the garbage cans, laundry.  He also assists with cooking along with his all time favorite, vacuuming!

Nick cooking

Here is the checklist of housekeeping activities:

Household chores checklist

I definitely see a few more on this list to add into Nick’s routine (except for #24).  Giving your child opportunities to help around the house is so important.  These jobs are the prerequisite which will lead to more independent living when they become young adults.  These skills may take longer to master.  With that in mind, it is helpful to use prompts.  Model the behavior, use hand over hand technique and visual icons/video modeling to help learn the sequence.  Set a regular routine where the chores would normally be done during the day and evening.

Nick vacumming_Tabor Hills (3)

Nick is happy to help out and beams with pride when I say, “Good job big guy” (followed by an elbow bump)!  As adults, we all like to be complimented for doing a good job.  Our kids and adults with special needs are no exception.  Pick a household task and give it a try with your child; never set limits.  You’d be surprised at what they can accomplish, and help you out in the process.  That’s what is in my noggin this week.

~Teresa

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