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……

nick-senior-alarm-pic

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

 

 

 

Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Education and Special Needs, Feeding, Personal Hygiene, Toileting, Parenting Special Needs, Resources for Special Needs

Blog #164~Why Use a Visual Schedule?

doctor-checkup

Blog #164~Why Use a Visual Schedule?

We all hate getting lost, it can be aggravating  and nervewracking. That’s why we use maps to help navigate our way.

mapquest

The same is true for a child with special needs who lacks verbal and cognitive skills.  Providing a visual schedule allows your child to see what is going to happen in their day. My son, Nick is 22 years old and has Down syndrome and autism. Visual schedules provide many benefits for him to travel smoothly, through his daily routine.

Nick fist bump AID

Benefits of Using a Visual Schedule:

*Provides structure and predictability by showing a child what is coming up next.  This greatly reduces anxiety and builds confidence.

*Helps with transitions from one activity to the next.

*Picture form is easier to understand than verbal instructions.  Children with autism often comprehend pictures and/or written directions easier than verbal cues alone.

*Helps to teach sequence of events especially when using words, “first”, “next”, and “last”.

*Expedites learning routines and fosters independence in self-help/hygiene skills and household/school jobs.

handwashing-routine

*Helps with time management and literacy development by reading through pictures and words associated with them.

*Improves conversation skills by giving a visual framework of what they did and what was their favorite part of the end of the day.

*Assists teachers and caregivers with routine changes, when things get out of sync.  It also helps to introduce a new and/or different activity.

dentist-checkup-visual

Visual schedules come in all shapes and forms and many are available in Google images.  You can adjust the length and type of images, (PECS-Picture Exchange System, photos, written words,  iPad/ smart phone apps) to what your child will most easily understand.

first-then-app

It’s best to start with a small routine and adapt the schedules based on your child’s needs and abilities. Try pairing a non-preferred activity (first) followed by a preferred choice (next).  Your child’s speech therapist can be of great help in creating picture sequences that would fit their needs.

Going through a visual schedule with your child, helps them understand what is going to happen, and what behavior you expect.

Here is one we use when going to the mall.  Note the visual below has going to the stores (first)  and Taco Bell (next) as the preferred activity.

IMG_3865

Sequence for going to church:

photo (106)

Full Day Schedule: ( Note, this could be broken up in separate pieces if this would be to overwhelming).

visual-schedule-for-a-day

Using visual schedules have been shown to be helpful for children and adults with special needs by giving them more control on what goes on in their daily lives.  It provides the road map to navigate for a smooth ride through their daily routines.  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

Blog #150~A&E’s Born This Way, an Exclusive Interview

Blog #150~A&E’s Born This Way, an Exclusive Interview

A&E’s Emmy nominated series, Born This Way premieres its second season next Tuesday, 7/26/16 at 10pm/9pm (Central).  Born This Way features a cast of seven young adults with Down syndrome.  The show follows each cast member pursuing their real lives with passions, wants and needs the same as any other person their age. It will warm your heart, make you laugh and smile. They shine a wonderful light showing how awesome their lives are. And they’ve got serious swag…..

A&E’s Born This Way premieres, Tuesday July 26th at 10pm/ 9pm (Central)

Trump_Key_Art_Premiere_FIN.indd

Recently, I was approached by the marketing department to partnership with A&E to help bring awareness and promote this show.  My son, Nick is 22 years old and has Down syndrome as well as autism.  So, I was happy to jump at the chance to do so.  Today’s blog post is an exclusive interview with the mother of Sean, a featured cast member on the show.

Sean McElwee is 22 years old.  He’s a dashing young man, an excellent golfer and gifted athlete. Sean thrived in inclusion in primary school and survived exclusion in secondary school.  He attends community college and works at Home Depot. He is a self-professed ladies man, and has dance moves that own the floor.

Sean with his parents Rick and Sandra……

Sean family pic

Let’s get to the interview with Sean’s Mom, Sandra Assimotos McElwee ….

Sandra Assimotos McElwee is an advocate for unborn babies with Down syndrome and created one of the first websites for parents with a prenatal diagnosis. She’s the author of three books,Who’s the Slow Learner? A Chronicle of Inclusion and Exclusion”. McElwee contributed to the books, Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Our Lives“,  and “You Will Dream New Dreams, Inspiring Personal Stories by Parents of Children with Disabilities.” Married over twenty-two years to Sean’s father, Rick, they enjoy traveling and participating in Sean’s sports activities.  A medical sales professional, McElwee’s most important job is being Sean’s mother.

Interview with Sandra McElwee, Sean’s mom:

1.     What advice do you have for parents with younger children and newborns that have Down syndrome?

—Enjoy your baby, don’t get caught up in the ‘what could be’ although I know it’s hard to not think about a future wedding when you have a baby. The dreams you may have, the dreams that you had that may have been dashed by the diagnosis –they will become new dreams and in my case dreams I could never have imagined in my wildest imagination! 

2.  During the age that Sean was in the public school system, what was the most difficult part of the IEP process for you?  Where you happy with the end result of schooling and his IEP.

—I’ve written a book about this—‘Who’s the Slow Learner? A Chronicle of Inclusion and Exclusion.’

Who's The Slow Learner

Sean was an inclusion pioneer, the first student included with a disability in his elementary school. His inclusion was such a success by the 4th grade the school became an inclusive school and there were no segregated classes and around 40 students with a variety of special needs fully included. The wheels fell off in secondary school. So no, I was not happy with the end result, but the first 7 years were text-book perfect.

The most difficult part of the IEP process was in high school when educators and administrators outright lied to me.  

3.  What advice would you give for new teachers and special education teachers who will be working with students that have Down syndrome?

–Please give your students opportunities. Allow them to express their interests and support them in pursuing their interests. Don’t assume just because someone can’t speak clearly that they don’t have something to say—listen to them. And do not expect a person with Down syndrome to have BETTER BEHAVIOR than the typical students.  

4.  What has been your biggest joy and accomplishment raising Sean?  What has been the toughest time and struggle?

–Seeing Sean grow into a confident, independent adult. The toughest struggles have been dealing with the prejudices of educators who limited his opportunities when he was in high school. 

5.  What would you like to share with the world about Sean, Down syndrome and being on Born This Way?

—I want the world to see that Sean and people with DS are more alike than different, they simply needs support and opportunities to show the world their capabilities. 

6.  As a mom of my son Nick, who is 22 years old and has Down syndrome; what are your biggest fears for your son now that he is an adult? 

—My biggest fears are that he will get his heart broken to the point of not wanting to try again…although he really has a lot of tenacity so like most fears, mine is probably unfounded.

I hope that Born This Way and this interview will enlighten and inspire parents, family, friends and educators who have been lucky enough to be touched by a child who has Down syndrome.  Be sure to set your DVR’s for A&E’s Born This Way.  Please share this blog and the additional social media links below.  That’s what is in my noggin this week!

~Teresa

Follow Nick:

scan0016

Facebook @Down Syndrome With A Slice Of Autism

instagram-logo#nickdsautism

pintrest@Down Syndrome With A Slice Of Autism

twitter logo@tjunnerstall

 

 

 

 

 

 

 

 

 

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

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instagram-logo#nickdsautism

 

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

Follow Nick:

Facebook @Down Syndrome With A Slice Of Autism

pintrest@Down Syndrome With A Slice Of Autism

instagram-logo#nickdsautism