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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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