Posted in Behavior/ ABA, Down syndrome, Dual Diagnosis Down syndrome and autism, Parenting Special Needs

Blog #185~ Down Syndrome: Supporting Positive Behavior

Blog #185~Down Syndrome: Supporting Positive Behavior

This month’s blog posts have focused on behavior management, specifically to individuals who have Down syndrome and autism.  I recently read, Supporting Positive Behavior in Children and Teens with Down Syndrome.  This book by pediatric psychologist, David S. Stein gives a comprehensive breakdown of how to deal with challenging behaviors, with a specific look at how the brain of a person with Down syndrome works.

Book Supporting Positive Behavior DS

This book is a must read for anyone who cares for, or works with, a child or teen with Down syndrome.  I only wish that this book had been available when 23-year-old son, Nick, was younger.  One of the key messages from this book, is how to look at behavior.  If you view a bad behavior as willful or intentional, the immediate reaction is to punish.  However, it is important to consider that the behavior is communicating some need.  The first section of this book, dives into the brain of a child with Down syndrome and cover behavior basics “101”.

In chapter 5, there is a step by step guide to behavior management system designed for children with Down syndrome:

Step 1:  Maintain the relationship (keep it positive)

Step 2:  Structure the environment for success

Step 3:  Use visuals, visuals, visuals

Step 4:  Notice good behaviors and set up token economies

Step 5:  Use proactive strategies to prevent negative behaviors and support positive behaviors

Step 6:  Manage the difficult situation before they happen 

The underlying theme in this book is how you approach behaviors.  Acknowledge that the behavior is NOT a willful or intentional act designed to make you upset.  Instead, view the behavior as an expression of some unmet need or challenge that has not been addressed.

“You can respond to a behavior thoughtfully, rather than emotionally.  You can learn to respond…but don’t react.”

Throughout the book, this is the common thread.  Respond… but don’t react.  Take your emotions out of the equation, and sometimes your gut reaction as well.  There are several chapters that address positive behavior management at home, school, community and with siblings.

When disciplining or responding to behavior, here’s what you should and should not do:

 You should:

*Take away eye contact.

*Keep your facial expressions neutral.

*Speak very little, if at all.

*Keep your tone of voice neutral.

*Keep your emotions in control.

*If removing attention and emotions is not enough, then direct the child to “take a break”.

And you should not:

*Look right at the child

*Make angry or upset faces.

*Try to explain, using words, why or what they did was horrible.

*Speak in a harsh, animated way.

*Show strong emotions.

Whenever possible, look for ways to prevent the behavior in the first place.  Try to determine what is causing the behavior, and what this functions serves the child.

There are often times which may be more difficult and cause more behavior problems.  These often occur in transition times, and especially during puberty.  These are addressed specifically in this book, along with when and how to seek help from a certified behavior specialist.

This book, Supporting Positive Behavior in Children and Teens with Down syndrome, is a concise guide to understanding behavior and how to manage it thoughtfully, by responding and not reacting to meet a child’s needs.  David S. Stein, packed a lot of punch into 132 pages.  I highly recommend adding this book to the cart.  That’s what is in my noggin this week.

~Teresa 🙂

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Posted in Autism, Down syndrome, Education and Special Needs, IEP (Indivdualized Education Plan), Parenting Special Needs

Special Needs Back to School Tips

Special Needs Back to School Tips

backtoschool1

Kleenex, glue sticks, crayons, and more, are all jotted down on the shopping list.  It’s that time of year to get ready to go back to school.  But what should you be doing as a parent of a child with special needs?  I’ve got 5 great tips to get you started on the right track!

5 Back to School Tips for Special Needs Parents:

Click here to view these 5 tips- https://nickspecialneeds.com/2016/08/22/blog-153special-needs-back-to-school-tips/

Make it a great school year, that’s what is in my noggin this week!

~Teresa 🙂

Follow Nick:

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Instagram #nickdsautism

Twitter @tjunnerstall

 

Posted in Autism, Behavior/ ABA, Dual Diagnosis Down syndrome and autism, Parenting Special Needs

Blog #180~Special Needs Moms,Let Go of the Guilt

ou Blog #180~Special Needs Moms, Let Go of the Guilt

No Guilt

Am I doing enough for my child?  Should I switch to a gluten-free diet?  Does my child need ABA (Applied Behavioral Analysis) therapy?  Maybe I should be diffusing essential oils?  These and many other questions swirl constantly, in the mind of a parent having a special needs child.  I should know after 23 years of raising my son, Nick.  He has a dual diagnosis of Down syndrome and autism.  Over the years, I’ve allowed doubt to creep in.  You see other moms talking about intense ABA therapy, up to 20 hours a week.  You hear testimonials of how a gluten-free diet helped to increase speech and decrease problematic behaviors.  Then, there are the success stories and pictures plastered over social media groups.  Compelling accounts of children excelling in Special Olympics, summer camps, recreational programs and the latest programs sure to launch your child new heights.  There is a tremendous amount of pressure to do it all.  So, you begin to question yourself as a parent.  Am I doing everything I can to help my child with special needs?  This is when the guilt begins to seep in.  That’s, when you need to let go of the guilt.

Parenting is a balance act.  The responsibilities of running a household, taking care of children and their activities along with your own personal job and welfare, can be enormous.  At several points over the last 23 years, I’ve hit walls where the pressure is just too much.

At those junctures, it’s important to stop, take a breath, and re-evaluate what works for your child with special needs, and the entire family……

*RE-EVALUATE- Which treatments, therapies, and recreational programs are useful? Where are you seeing growth and enjoyment for your child?  Weigh the benefits against the disadvantages of each program, treatment, and therapies that you are considering.

*PRIORITIZE- What activities are essential for my child and any siblings?  Which of these activities are needs/must haves (like swimming lessons), and which are wants (like a recreational soccer program)?

*STRIP BACK- After you’ve re-evaluated and prioritized, create a new schedule that suits your family.  Listen to the cues of your child, (and yourself).  Is it stressful, time-consuming, expensive or sapping your energy?  Has it become a huge inconvenience and unfair to the rest of your family?

Right now is a perfect time, before school starts, to take a deep look at all the therapies and activities your child and siblings are involved in.  Are these programs enhancing their growth?  How much time are you spending in the car, commuting all over town for these therapies and other programs? Sometimes, it’s just TOO MUCH for you child and other family members.  Consider scaling back, and opt to incorporate learning activities at home. Ask your child’s therapists for suggestions on how to do this.  With their help, create learning (TEACCH) activities that can be done at home.  It really helped me to achieve better balance, when I scaled back, and incorporated a few of the TEACCH activities along with natural occurring jobs around the house, instead of driving all over town each day to therapies.  🙂

TEACCH (Treatment and Education of Autistic and Communication is an evidence-based service, training, and research program for individuals of all ages and skill levels with autism spectrum disorders.  

Here are some TEACCH bins we do in our home with Nick…..

Task Strip with a highly preferred reward to work towards. Nick picks out a reward  from his PECs (Picture Exchange Communication book) or AAC (Augmentative and Alternative Communication Device).  He usually chooses a Sprite….

Task Two Strip

Nick get’s handed the #1 and matches to the bin and completes the activity.  Once this is done he puts the #1 on the green task strip.  This is repeated for all four bins. The activities range from sorting, matching, assembly, folding, and fine motor.  Bins can be customized to fit the needs of an individual child.  These are just a few of many Nick does.  Be sure to mix in some that have a high success rate, with more challenging activities suitable for your child:

bins 1 and 2   Bins 3 and 4

Naturally occurring activities can also be added around the house throughout the day.  Examples include unloading the dishwasher, garbage/recycling, laundry, putting groceries away, cleaning counters, vacuuming, and gardening.

Nick watering plants

All these activities help to build new skill sets, confidence and independence.  The TEACCH activities are also implemented by respite caregivers, which we’ve hired with the help of state waiver funding.  These caregivers work on goals both in the home and out in the community. Respite workers can also help take your child to afterschool activities such as therapy, Special Olympics/ sports or swim lessons and social groups. Having respite care or hiring a babysitter, allows a parent to get a break and take time to get out and enjoy their own life.

It’s so easy to get bombarded with advice on treatments, diets, therapies and recreational programs related to special needs.  As a parent, you need to decide what is useful and stop feeling guilty about doing everything single therapy and program to help your child.  Do your research, weigh the pro’s and cons, and decide what works best for your child and family.  Don’t allow those guilty thoughts to rob your peace, or make you doubt your parenting skills.

relax boardwalk

That’s what is in my noggin this week.

~Teresa

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

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

Mom,are you taking care of yourself?

Mom, are you taking care of yourself?

Pour Cup

Today, I took a page out of my own blog.  I took some extra time to do something that I love.  Last week I wrote about the importance of doing so.  Sometimes as moms, we are busy doing so much for others.  We don’t always carve out the time to put ourselves first.

In case you missed the blog last Monday, click below………

https://nickspecialneeds.com/?s=mom

It was a warm, sunny day and just perfect for planting.  Digging my hands is the soil was good for my soul.  Picking out the color palate of flowers and accents, along with some tomato plants is always so enjoyable to me.  It was a nice slice of peace and serenity that helped me to feel restored and energized. 🙂

flowers

I hope all of you moms had a wonderful Mother’s Day.  What are you going to take care of yourself this week?  Give yourself a decadent slice of something sweet that you enjoy, because YOU deserve it!  That’s what is in my noggin this week.

~Teresa 🙂

relax

Follow Nick :):

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Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

Posted in Parenting Special Needs

Blog #174~ Mom,Take Care of Yourself!

Blog #174~Mom, Take Care of Yourself!

A message to all of you moms out there in the trenches, up to your elbows in laundry, cooking, cleaning and wiping up snot, or changing countless dirty diapers…….

Pour Cup

Trying to be perfect and do everything yourself doesn’t work.  Sometimes the items you put on your to-do list get bumped to the next week or month.  Life gets in the way, especially if you are raising a child with special needs.  My son Nick is 23 years old, and has Down syndrome and autism.  There was a time when I would beat myself up.  I felt tremendous guilt about not doing enough for him, and the rest of my family.

The internal dialog was something like this…..

Nick’s not sitting up yet, I need to do more physical therapy exercises at home.   I shouldn’t be sticking in a Barney video all the time.  He should be potty trained by now, what am I doing wrong?  I don’t have enough time to spend with my older son.  There aren’t enough hours in the day to get things done around the house. 

This was the first lesson I learned.  Stop trying to be perfect and let go of the guilt….

There’s nothing wrong with having your own pity party every once in a while, along with a good cry.  But self-pity and guilt can eat away at your psyche and rob you of happiness.  It is at these junctures, that I learned to evaluate the challenges in front of me.  Prioritize what is urgent and act upon them.  The rest of the expectations, were often things that I put upon myself, causing more unwanted stress in my life.  Don’t get me wrong, the guilt still pops up on occasion.  But it doesn’t consume me anymore.

Which leads me to the second lesson I’ve learned…….

Make Time for Yourself

I’m no good to my family if I can’t let it go, and take care of myself.  What makes you happy?  Do it, get back to doing it!  Carve out niches whether it’s taking a walk outdoors, meeting a friend for coffee, reading a book, or getting back to a hobby you left behind once the kids were born.  Slow your pace during these times and savor the moments when you make time for yourself.

The third thing that I’ve learned, combines the two above.  It is the importance of finding balance…..

Balance

Life can be crazy with kids, running them around to therapy/doctor appointments, sports programs, and enrichment classes.  On top of those Uber duties, there is running a household and if you have a job outside the home, the pace can be non-stop.  A car can’t run from zero to sixty mph, without shutting off the engine and stopping to refuel.  What are you doing on your fuel stops?  When you turn that key and the motor stops, think about going to a place that gives you a simple pleasure.

On my pit stops, I tend to grab the remote to shut down, kick back and do nothing.  Sometimes it’s a binge watch of Fixer Upper on HGTV, other times it’s a show on The Bravo Channel (thank you Andy Cohen).  It’s a time to de-compress, relax and escape.  This “do nothing” time allows me to re-fuel.

As Mother’s Day approaches, my hope is for all moms to let go of the guilt, make time for yourself, and find balance and resist the urge to get everything doneTake care of yourself, you can’t pour from an empty cup!  When you find the balance, the happiness returns and there is more peace and fulfillment in your life as a mom.

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

~Teresa

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

 

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

pintrest@Down Syndrome With A Slice Of Autism

instagram-logo#nickdsautism