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

Blog #228~DS-ASD and Managing Stress as a Parent

Blog #228~DS-ASD and Managing Stress as a Parent

Let’s face it, parenting is stressful with all the demands that are draining on a daily basis.  Raising a child with special needs compounds this even further.  A child with an intellectual or developmental disability such as autism, Down syndrome or a dual diagnosis of Down syndrome and autism (DS-ASD) has even more demands, with living skills, communication and behavior.  These additional needs means the parent has to work even harder.  This can drain parents both physically and emotionally.  I have been dealing with this stress for 24 years, as my son Nick has a dual diagnosis of DS-ASD.  Here is what the stress looks like for a parent of a child with special needs, and some coping mechanisms to combat it.

stress ball

So what does stress look like for parents raising a child with special needs?  Yes, there are the usual demands of running the household, carpools, extra curricular activities and homework of the child and any siblings, but there is much more.  There are often additional therapy and medical appointments on the calendar each week.  Balancing this with all the other activities can be tricky, with someone feeling short-changed in the family.  As I mentioned earlier, a child with special needs may need additional help with daily living skills, communication and behavior management.  If a child is non-verbal or limited in speech, the parent may have to play the guessing game on what the child needs. Deficits in communication skills can often lead to behavior problems.  Maladaptive behaviors may prevent the family from doing activities, attending outside family gatherings and special events together.  One parent may opt to stay home with the child, which over time, may impact the marital relationship.  This also creates a sense of isolation.  All of this can lead to feelings of guilt by the parent, which is one of the biggest internal stressors.

So, how can you manage stress as a parent of a child with DS-ASD or any other intellectual or developmental disability?  Ideally, a parent would schedule a vacation or spa weekend getaway, right?  But what if you don’t have the time or resources for such an elaborate indulgence?

spa getaway

Stress Management in my opinion, begins with mindfulness.  Carving out a few minutes for yourself is key.  Dedicate a time where you can meditate.  Free your mind of all distractions and breathe deeply.  This will allow the heart rate and blood pressure to lower and reduce stress.  Last week, I had lunch with my niece, who recently returned from a spiritual cycling journey and yoga retreat overseas.  We talked about the concept of truly being present in the moment.  The focus can be as simple as being aware of your senses……..

Step outside notice how the sun and warm breeze feel on your face. 

Quiet yourself and enjoy the texture and taste of each bit while you eat.  Take in the aroma and softness against your fingers, as you bite into the pita bread.

Listen and feel how the snow crunches under your feet, take in the cool air and watch as you exhale, seeing your breath rise up into the blue sky.

Sit silently, maybe with your child or pet, feel the softness and listen to your breaths.  Do nothing,  just be as one.

Put on your favorite music.  Focus on the beat, various musical instruments, vocal tones, and harmonies.  Note the meaning of the lyrics, and how it all  feels to your body, mind and soul.

Mindfulness is simply paying attention to the moment that you are in right now, and freeing yourself from worry.  Spending time in the present and focusing on your senses, will allow you to feel less tense.

Pairing mindfulness with gratitude cancels out negative thoughts and worries.  Some days can be challenging and exhausting.  In those times, remind yourself that there is always something or someone to be grateful for.  Showing gratitude can boost morale for  yourself and others.

Taking time to get physical activity in daily can greatly reduces the effects that stress can take on the body.  Even small bursts of exercise, taking a fitness class or a walk around the block can make a difference on how you feel.

It is also important to reach out and share what is going on with friends, family and support groups.  Isolation can be debilitating.  Sharing your struggles can give you a fresh perspective.  There is much to be gained in finding a support group of like-minded individuals who are on a similar path.  In the DS-ASD world, we share success stories, challenges of our child’s delays, and difficult behaviors.  We offer suggestions on how to find a better way to manage the unique challenges associated with our kids and applaud the milestones they hit.  When you share your struggles, (and do so with a dose of humor), you don’t feel alone anymore.  That can be a powerful thing.

Reducing stress doesn’t have to be a big, fancy trip or getaway.  Taking time to exercise mindfulness, gratitude, doing some type of physical activity, and opening yourself up to others, are all simple ways to reduce anxiety.  Allowing people to come in your life for support, will help make difficulties more manageable. Most of all, it’s essential to take some time and find ways to relax your mind. This allows you to re-charge and lessen the degree to which stress can affect the body and mind.

let yourself rest

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

~Teresa

Follow Nick on Social Media:

Facebook and Pinterest at Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

 

 

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

Blog #227~Ditch the New Year’s Resolutions, Here’s a Better Idea

Blog #227~Ditch the New Year’s Resolutions, Here’s a Better Idea

How many times have you made a new year’s resolution and failed to reach it?

new-year-resolutions-825x549

New Year’s resolutions can be daunting and difficult to keep.  This year, I am changing  my tune.  I’ve adopted a new principle personally and for my son, Nick who is 24 years old, and has a dual diagnosis of Down syndrome and autism.  As a fitness professional for 35 years, my job is to motivate, challenge and inspire my clients.  Being fit and healthy isn’t just about eating right and exercising.  To feel your best, you must take care of the mind, body and spirit collectively.  As a parent of a child with special needs, there are more demands, that can wear on you both physically and emotionally.  It is essential to take care of your physical and mental needs to reduce stress and avoid burning yourself out.

mind body spirit

I was listening to a Sirius XM radio interview with Teddi Mellencamp (yes the daughter of John Mellencamp), who is an accountability coach. She gave a better alternative, instead of making new year’s resolutions.  Teddi suggested that you pick 3 things each day that will take care of you personally, and hold yourself accountable.  Write them down, and try it for just 5 days.  These should be centered around helping you to feel better, both physically and emotionally.  By doing this, you begin to create good habits, that leads to confidence, and ultimately changing your lifestyle.

So, I tried it by writing down 2 things each day (3 seemed too much with my busy schedule).  Here are a few things I did:

*Cleaner eating- Replace Sun Chips with almonds and make a chicken wrap with only avocado and lettuce.

*Relax, stretch and be mindful of breathing to relax and calm the body,

*Bump up home workout weights from 10 to 12 pounds.

*Be mindful of the gratitude you receive throughout the day

*Eat an extra piece of fruit.

*Turn off the TV and listen to music I enjoy.

*Be compassionate, smile at a stranger and do random acts of kindness.

*Drink one less cup of coffee and replace with more water.

*Go upstairs, every time I needed something, instead of waiting until things have accumulated.  (This increased my steps significantly).

*Apply one of the principles of Feng Shui.  De-clutter home and clean 8+ years of dust off the high cabinets to increase the flow of chi energy.

*Pray more throughout the day.

*Shop on the outer edges of the grocery store as much as possible. (This is where the nutrient dense, clean and less processed foods are located).

*Respond, and don’t react with anger.

*Meditate for 10 minutes.

I have to say, there is a feeling of personal accomplishment when you hold yourself accountable, and do just 2 things a day to promote personal health both physically and emotionally.

relax

As a fitness professional, here’s what I suggest on how to start a new fitness program.  Don’t set yourself up for failure. Replace the resolution of going to go to the gym 5 days a week with a more reasonable goal. Change the mindset to, doing some physical activity 3-5 days a week.  If you can’t make it to the gym, or you are too tired, then get out and walk or do some calisthenics for just 10 minutes.  Add an extra minute to each workout.  It will all add up, and you will build confidence and feel less guilty.  Break it down to smaller pieces and you will set yourself up for success! 🙂

This got me thinking that maybe I should apply this principle with my son, Nick who has Down syndrome and autism.  Being a parent, we often feel like we are not doing enough to help our child learn and develop skills.  Blame it on housework, our jobs, time schedules/demands, and just plain exhaustion which leads to feelings of guilt.  So, I am going to just focus on one thing that will help my son be more independent each day.

I started yesterday, by encouraging Nick to use his AAC (Augmentative and Alternative Communication) device.  Nick successfully used it to request breakfast and lunch, along with a few other highly preferred rewards he enjoys.

Today, I will continue to focus on Nick using his AAC device by requesting foods and after dinner getting him to ask to take a shower.  These are little steps, but they can add up and enable my son to realize the power of using his voice, via his talker.  I have to constantly remind myself to be disciplined with not only myself, but with my son.  Ultimately, our goal as parents is to guide our children to be as independent as possible and in the process, help them gain more confidence as individuals.

Saying goodbye to New Year’s resolutions, that are often impossible to keep for 365 days, feels liberating.  Shifting the mindset to smaller goals is more realistic.  Little changes add up to building healthy habits.  It will help you feel better physically and emotionally each day.  Plus, it’s attainable and a more reasonable approach to making positive changes.  Breaking things down into smaller pieces is a better way to have success, and build confidence gradually and consistently.  It also allows you to let go of the feelings of guilt that you aren’t doing enough for yourself and your family. I would love to hear your ideas 2-3 things you might add to improve your mind, body and spirit each day!

That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick on Social Media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

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

Blog #226~DS-ASD and Being on Holiday High Alert

Blog #226~DS-ASD and Being on Holiday High Alert

The Christmas tree has been taken down, and all the decorations are packed away.  Now I can let out a sigh of relief.  The three celebrations both before, during and after Christmas with our families, were action packed.  We stand on guard, watching for signs of stress that might trigger a meltdown or other undesirable behaviors.  Our son Nick is 24 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD).  The sensory overload of noise, crowds, overstimulation, and changes in routine all make for a dangerous cocktail living in the world of autism.

One thing that I have learned navigating Nick’s world with a dual diagnosis of DS-ASD is that you can’t let your guard down, EVER!  So was the case over the holidays, which for the most part, went smoothly.  Christmas eve while in route to mass, Nick rattled off a stream of swear words that could rival any salty, crusty sailor.  While the rest of the congregation was praying for good health and world peace, I prayed that Nick wouldn’t drop a G-D bomb in those moments of silence and genuflection.  Thank God, he settled down and was quiet during the service.

nick 2018 christmas

After Christmas we headed down to Texas to celebrate with my family. Our flight down to Houston was smooth.  We even take him into  the of the United Club these days. Yes, there were crowds, but Nick knows the drill and loves going places, so he is motivated to be compliant.

Nick cruising through his favorite part of Chicago O’Hare Airport….

nick at o'hare

Once we reached the condos, the first thing we all noticed was every single floor of the three-story building had a fire alarm next to each stairwell.  It was a land mind of red buttons, just begging for Nick to pull them.  All hands were on deck for the next few days. We all worked together securing blockers, reminding Nick, with the compliance command, “Hands to self, big guys keep on walking”.  He was definitely staring them all down as we passed each one during our stay.

On the second day of our visit, we arranged to take family photos at a local winery.  Nick has never been a fan of these type of photo ops. Sitting patiently for photos irritates him.  Afterwards, we did a wine tasting and the kids ate some appetizers.  There was no structure to the afternoon, just a family enjoying each other’s company.  Nick grew restless, and while no one was paying attention to him.  So, he spiked a wine glass, shattering it all over the concrete floor.  As the staff member swept up the mess, Nick tossed his brother’s marinara sauce in the same direction.  The red sauce splattered all over the staff worker’s jeans as he swept up the shards of glass.  I apologized profusely and explained that Nick had Down syndrome and autism.  It’s at this juncture, that I knew that we had to get him out fast, before things escalated into a full meltdown.  There is no reasoning with Nick at this point, so a few of us did a cut and run, to get him back to the condo.

Later that evening, the whole family gathered into one condo so the grandkids could open their Christmas gifts.  While I was sorting out and distributing the gifts, a familiar sound blasted from outside.  I jumped up and made a beeline out the door to look for Nick.  I made my way downstairs in a panic, alerting the other patrons that it was a false alarm.  I didn’t know where Nick had run to, and it terrified me.  But thankfully, he was waiting at the bottom of the stairs with his eyes glazed at the blazing alarms and lights blinking.  I have no idea if my son pushed more than one alarm.  I yelled up to Al to call the front desk and let them know it was a false alarm.  Meanwhile, I grabbed Nick’s hand and walked a good 200 feet away, so he wouldn’t get the reinforcement he craved.  My hands shook as I asked Siri on my iPhone, for the number to the Conroe Fire Department, located nearest the resort.  But then, a calm focus came over me, as I explained to the firefighter about my son and his penchant for pulling alarms.  The gentleman was very understanding and kind over the phone.  Fortunately, I caught them in time, so they did not dispatch a firetruck, whew!

That was #54 on fire alarm pulls for Nick since 3rd grade…….

firelite-pull-station

Bottom line, this is a reminder that our immediate family can never let our guard down, EVER.  It’s easy to get lulled into the fun and festivities, and get caught up in the moment.  But that’s the moment, that Nick can wreak havoc, in just a split second.  We can’t expect extended family members to understand Nick’s impulses in the way we do.  My husband, Al and older son Hank have a system of checks and balances in place when taking care of Nick.  One of us always has at least one eye on him at all times, especially in new environments.  We are the primary caregivers, and ultimately are responsible for Nick.  Sometimes we screw up in life, and we did that day.  But, you just have to learn from it and move on.

While Nick can give us all a run for our money at times, he also has a way of showing his pure heart.  On this trip he got to meet his new cousins Greyson and Gannon who are twins.  The twins are a year old, and Gannon has Down syndrome.  Nick was drawn to Gannon and the bond was clearly evident.  Nick was very gentle around him.  As my niece, Courtney was packing up the boys to leave, Nick bent down and gently loved on Gannon.  My family looked on and in the silence, Nick brought us all to tears. 🙂

 

My Niece, Courtney is the mom of four boys and wasted no time in becoming a great advocate for Down syndrome.  This is a blog I wrote last March about Courtney’s journey, @ https://nickspecialneeds.com/?s=Down+Syndrome+A+New+Beginning

Christmas holidays while fun, can be stressful for all of us.  Having a child with special needs creates more challenges with more noise, crowds, overstimulation, and changes in routine causing sensory overload.  This holiday was a reminder for our immediate family to stay vigilant, and remain on watch at all times.  The responsibilities of being a caregiver for a child with a dual diagnosis of DS-ASD is staggering and should never be taken lightly.  Now, I’m going to exhale, learn from my mistakes and keep pushing forward.  As 2019 begins, my mindset will attempt to shift from holiday stress to a calm, warm, and cozy winter peace.  I wish you all the same for the new year.

snowman in hot chocolate

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

~Teresa

Follow Nick on Social Media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Posted in Autism, Autism Spectrum Disorder (ASD), Dual Diagnosis Down syndrome and autism, Recreation/Leisure and Special Needs

Blog #225~Autism and Holiday Stress Tips

Blog #225~Autism and Holiday Stress Tips

Let’s face it, holidays are stressful.  Navigating the Christmas season with a child who has autism is even more demanding on families.  My son, Nick is 24 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD).  We’ve had our share of challenges, as do many families who care for an individual with special needs.  But, here are 10 ways to ease holiday stress and manage the upcoming weeks of festivities.

Keep Calm Christmas

10 Autism Holiday Stress Tips:

1.Start early, get as much done ahead of time with holiday preparations.

2.Pare down where you can, whether it’s decorations, presents, or parties. It’s okay to   say no or bow out early.  Flexibility is key!

3.Don’t rush, allow enough time to get from point A to point B. Give more notice when it is time to transition. This will help to avoid meltdowns.

4.When possible, try to stick to routines.

5.Avoid surprises, prepare your child ahead of time.  Make social stories using visuals or written words (depending on your child’s level of comprehension). This will act as a script for your child to follow. If they can see what’s expected, they will understand the plan and lessen anxiety levels.

IMG_3865

6.Provide pictures of family members and friends that you don’t see that often prior to visiting them.  Notify family and friends of sensitivities and sensory behaviors your child may exhibit.  Nick makes vocal stim sounds and taps objects which helps him to self-regulate.  Some individuals with autism do not like hugs or fail to make eye contact.  Family members might engage instead with a special handshake, high-five or Nick’s favorite, the elbow bump 🙂

Nick and jenna elbow bump

7.When traveling or lodging outside your home, pack comfort items like toys, music, movies, electronic devices and snacks.  Have these readily available.

8. Give your child opportunities to help out. Heavy work activities provide sensory input that is calming.  Here are a few Nick enjoys…..

 

9.Know your child’s limits.  There is so much sensory overload this time of year with excessive crowds, noises, lights and cramming too much into a day. This can be very overwhelming.  So, watch for signs of distress (Nick will pinch his own cheeks, yell and say I’m mad).  Redirect with a break icon, and seek out a quiet spot before activities begin.  It may be necessary bailout here before behaviors escalate, to avoid a meltdown.

10.Allow for down time, to kick your feet up and relax.  Weighted blankets are great for deep pressure that can help to calm the sensory system.  I recently found out these blankets are available at Target.  Hmmmmm……that sounds like a good excuse to go to Target. 🙂

Disruption in routines, schedules, and stimulating environments make for a holiday filled with fraught for individuals with autism and other special needs.  But preparing your child and having a bailout plan, will help keep the stress levels down, making the Christmas season more merry and bright.  How do you to keep calm this time of year?  Please share your secrets to surviving the holidays in the comments!

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

~Teresa 

Follow Nick:

017

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

 

Posted in Adult Day Programs for Special Needs, Autism, Behavior/ ABA, Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #224~Using Social Stories for Behavior Management

Blog #224~Using Social Stories for Behavior Management

Nick’s got a thing for button pushing, all kinds.  You name it, he pushes them, including mine.  Phone intercom, microwave fan, dishwasher, and his all-time favorite, fire alarms. My son is 24 years old and has a dual diagnosis of Down syndrome and autism.   He has a behavior support plan in place to address this behavior, along with throwing and dropping objects.  The incidences of the behaviors, seem to occur when he is bored or seeking attention.  It would be tempting to just throw my hands up in the air and accept this as Nick just being Nick.  However, I have always been determined to find ways to make things better for my son.  So, a few months ago, I rolled up my sleeves and got to work with Nick’s behaviorist.  Have things improved, yes and that’s what I’m happy to report this week.

Big Guy Nick 🙂

Nick has quite a rap sheet pulling over 50 fire alarm pulls since third grade.  In Blog #216~Putting Social Stories Into Action, I wrote about creating social stories to shape the desired behavior you want for a child.  A social story is a visual support that can help individuals with intellectual and developmental disabilities understand new events, along with reinforcing skills, tasks or behaviors.  The behaviorist and I created an incentive plan built into a social story. This is reviewed twice at his adult developmental training program.  The story encourages Nick to make good choices.  Following the story read, Nick walks the halls with a staff member.

The staff cues Nick, using the compliance commands, “hands to self” and “big guys keep walking”.  Now I hope this doesn’t jinx anything, but I’m pleased to report that Nick has gone 3 months without pulling a fire alarm.  🙂

Now back to the behaviors he exhibits around the house.  In Blog #216, the behavior of throwing his iPads was addressed.  For a week, I locked both of them up.  After a very long week, Nick was excited to get them back.  Before this occurred, I read this social story to him several times, having him follow along and pointing to the basket where he needs to put the iPads when he is all done.  The incidences of Nick dropping and throwing his iPads has reduced significantly.

iPad Social Story:

The success of the behaviors improving are due to 3 things.  Nick, as do many individuals with autism, respond well to visuals.  He may not be able to read words, but he can follow along with the pictures and understand what is expected.  Secondly, parents and caregivers must be consistent in reading the social story and remain in close proximity, reminding the child to make good choices.  Behavior change doesn’t happen just by making a behavior plan and putting together a social story.  Success occurs when everyone is on board to carry out the plan in a consistent manner and follow through with consequences.

Have these behaviors been extinguished?  The answer is no to that question, but they have been contained.  Nick attempted to pull a fire alarm out in the community last week, but failed.  At home, he drops and tries to throw his iPads, but not near as much.  I have to stay on him to make good choices and reward him with praise and elbow bumps when he does.  If he doesn’t make a good choice the iPads get locked up.

I think the fact that my son is open to making good choices and being more compliant, is a win in my book.  I find it hopeful, that Nick is learning new behaviors at age 24.  I will continue to strive on following through and reinforcing the desired behaviors that will help Nick be more respectful and compliant young adult.

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

~Teresa

Follow Nick:

Facebook and Pinterest @Down Syndrome With Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

Posted in Adult Day Programs for Special Needs, Autism, Behavior/ ABA, Down syndrome, Dual Diagnosis Down syndrome and autism, Fun Side of Nick

DS-ASD Fall Update

DS-ASD Fall Update

fall pumpkins

Here’s what Nick’s been up to this fall.  My son is 24 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD).  He attends an adult developmental training program each day.  The program keeps him busy with many enrichment activities and developmental learning skills are incorporated throughout the day.  Outside this program, Nick enjoys spending time with his personal support respite workers out in the community.

Some of the highlights of Nick’s day program are community trips, including shopping, museums, bowling and going out to eat.  In house, communication, functional living skills, recreation, music, movies, gardening, crafts and cooking are all a part of the curriculum.

Here are some of the fun things Nick’s been up to this fall outside the day program……

NIU Football Game, with Dad. Go Huskies!

NIU football game

Pumpkin Patch with Miss R….

Nick loves eating out and date nights with his personal support workers, Miss R, Jodi and Kelsey.  The look on his face says it all!  I think he’s got the “smizing” down, Tyra Banks 🙂

Here in Chicago, the fall weather was less than desirable.  But, there were a handful of mild, sunny days in the chilly mix. At least the Chicago Bears are playing some great football this season.

Go Bears!

Nick Bears Jersey

Nick is 24 years old, but I’ve noticed that he continues to gain new skills and behaviors which are both good and challenging.  I am always seeking new ways to support him to make good choices and curtail the undesirable behaviors, like button, fire alarm pushing, throwing and dropping things.  I am happy to report that some of these behaviors have started to diminish since adding in two new social stories.  Social stories are great tools to teach new skills and behaviors.  Next week, I will share more about these two stories, and how they have been implemented both at home and at his day program.  How’s that for a teaser? 🙂

Life has been good this fall, in Nick’s world, and the rest of us are just trying to keep up.  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 Behavior/ ABA, Down syndrome, Dual Diagnosis Down syndrome and autism

Blog #223~When It’s More Than Just Down Syndrome

Blog #223~When It’s More Than Just Down Syndrome

Parents of a child with Down syndrome will post questions online, about the possibility of their child also having autism.  Their questions are, what are the signs and symptoms, and also what is the benefit of having a secondary diagnosis of autism with the primary diagnosis of Down syndrome (DS-ASD)?  Having navigated the path of a dual diagnosis of DS-ASD for 24 years and working as a dual diagnosis specialist and consultant, I can attest to the benefits of getting the secondary diagnosis of autism along with Down syndrome.

Do you suspect that your child, student or client with Down syndrome may also have autism?  Learn about this:

*The signs and symptoms of DS-ASD

*The benefits getting an evaluation and secondary diagnosis of autism related with Down syndrome

*What additional services are available to support a dual diagnosis of DS-ASD

*Resources and support related to having a dual diagnosis of DS-ASD

Click here to learn find out: @https://nickspecialneeds.com/2016/09/12/blog-155more-than-just-down-syndrome/

Getting the secondary diagnosis of autism along with Down syndrome was the key to unlocking the door for more specialized training, communication and behavior support, funding and respite care for my son, Nick.  It also lead me to find support groups that are dealing with tough issues that are unique to children and adults with a dual diagnosis of Down syndrome and autism.

magic key       down syndrome and autism intersect

Please feel free to share this blog post and any others that I’ve written.  My goal is to enlighten, educate and provide support for parents, families, professionals on navigating the path for children and adults, with special needs.  Message me if I can be of help, and be sure to check out our social media sites below.  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, Down Syndrome Awareness, Resources for Special Needs

Blog #222~Dear Doctor,A Down Syndrome Diagnosis is a Hope Story

Blog #222~Dear Doctor, A Down Syndrome Diagnosis, is a Hope Story

What is the right way for a doctor to deliver the news that your baby has Down syndrome either pre-natal or at birth?  Over the weekend, I received a link from Nothing Down, called Dear Doctor http://www.nothingdown.org/ The short film link, interviewed parents who shared their experiences with their doctor.  The delivery of the news of a Down syndrome diagnosis was often cold, stoic, and grim.  In some cases, the doctors told the parents what their child couldn’t do, while others were offered the option to terminate the pregnancy.  So how should a doctor deliver the news to parents that their baby has Down syndrome? Educating medical professionals, communities, and advocating for inclusion and acceptance, are some of the goals during the month of October, which is Down Syndrome Awareness Month.  The more you understand Down syndrome, the less fear you will have about the navigating the challenges associated with the diagnosis.

DS-Awareness-Month

I’m excited to share a new program that is going to change the way many medical professionals will deliver a pre-natal or birth diagnosis of Down syndrome.  It’s called Hope Story!

Hope Story’s Mission:

“Hope Story exists to give support, encouragement and hope to parents whose child have received a Down syndrome diagnosis; to provide free resources to the medical community to help them deliver a Down syndrome diagnosis, and to find ways for parents of children born with Down syndrome to use their unique story to bring hope to others.”  

Hope Story Helps 3 Main Groups:

*Parents whose child received  a diagnosis of Down syndrome.

*Parents who have a child with a diagnosis of Down syndrome.

*Medical Professionals

Hope Story will be providing kits to advocates who will partner with medical professionals.  Hope Advocates will inform, educate and allow doctors to get to know someone with Down syndrome on a personal level.  Tools in the Hope kit contain valuable information on how to deliver a diagnosis of Down syndrome, and a preferred language guide to help talk about Down syndrome with dignity, respect and hope.  In addition, the Hope booklet addresses concerns a new parent may have about Down syndrome.  Other tools include welcome letters, announcements, business card and  training videos for Hope advocates.

For more information on Hope Story click here:   @https://hopestory.org/about/

I’m looking forward to being an advocate for Hope Story, and the opportunity to work with medical professionals on delivering a positive pre-natal or birth diagnosis of Down syndrome.  Giving hope to other families who have a child with Down syndrome, has been the fuel for my writing for many years.   One thing I wish someone would have told me 24 years ago, when my son, Nick was born is this:

DD are like comas

Babies and children with Down syndrome have to work harder with physical, occupational and speech therapy to hit developmental milestones, and yes it may take longer, but they will and it hit them, and it will be grand!

My son Nick, age 24 🙂

Nick Key West

As we close to the end of October and Down Syndrome Awareness Month, I feel optimistic about the future of  individuals with Down syndrome.  We are moving beyond awareness, to acceptance and inclusion in society.  The future looks much brighter, with more opportunities for individuals with Down syndrome.  I’ve highlighted many success stories all month in my blogs, and social media listed below.  Education and understanding about Down syndrome is the key, and Hope Story is taking charge to help medical professionals and parents.  When you have knowledge and hope, the fear subsides.

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

~Teresa

Follow Nick and view more about Hope Story and the Dear Doctor film on social media:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall

 

 

 

 

Posted in Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism, Resources for Special Needs

Blog #220~Down Syndrome Good Reads

Blog #220~Down Syndrome Good Reads

October is Down Syndrome Awareness Month.  This week, I want to highlight books associated with Down syndrome.  You can click on my resource book shelf page, to view a comprehensive list of books:  https://nickspecialneeds.com/resource-book-shelf/

Woodbine House is the gold standard for resource books related to Down syndrome and other intellectual and developmental disabilities for parents, family members, children, teachers, and other professionals.  This publishing company has over 40 books on Down syndrome with a  30% discount this month! http://www.woodbinehouse.com/product-category/down-syndrome/

Woodbine House Sale

There are a lot more books on Amazon, related to Down syndrome.  One that caught my eye, with a 5 star rating and solid reviews is The Parent’s Guide To Down Syndrome by Jen Jacob and Madra Sikora.  The reviews for this book state that it is upbeat, current, informative, insightful, and a fun and easy read:

parents guide to DS book

https://www.amazon.com/Parents-Guide-Down-Syndrome-Information/dp/144059290X/ref=sr_1_1?ie=UTF8&qid=1539620279&sr=8-1&keywords=The+parents+guide+to+Down+syndrome

In addition to books for parents, teachers and professionals, there are many children’s books about Down syndrome both on Amazon and in my resource book shelf link, that I listed above.

 

Promoting acceptance and inclusion are two goals of Down syndrome Awareness Month.  Many parents and advocates do presentations at schools and in their community, incorporating book reads and power point presentations to educate others.

Donating books to local public and school libraries is a great way to spread the word about Down syndrome.  Many Down syndrome support groups provide materials, like bookmarks and calendars, that can be distributed as well.  In addition, these support groups often provide training to become a speaker and advocate.  Check with your local support group to see if they have a resource libray with books, tech and other resources to help families who have a child with Down syndrome.

Gifts book cover

The books and links I provided here, will help parents, family members, teachers and professionals better support a child having Down syndrome.  In particular, the Woodbine House books provided me with encouragement, understanding and practical tips for growth/medical management, academic skills in reading/math, gross and fine motor development.  This gave me more confidence to better advocate and help my son, Nick who is now 24 years old.

I hope these good reads provide a lens on the subject of Down syndrome to further educate, and promote acceptance and inclusion.  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, Down Syndrome Awareness

Blog #219~ The Faces of Down Syndrome

Blog #219~The Faces of Down Syndrome

The faces of Down syndrome are more prominent in 2018, than they were 24 years ago when my son, Nick was born.  Acceptance and inclusion are two things we advocate everyday, and especially in the month of October, which is Down Syndrome Awareness Month.

Down syndrome awareness month

This week I want to highlight some of the faces of individuals with Down syndrome who are making a difference, by advocating acceptance and inclusion.  There are more models with Down syndrome in the media, thanks to companies like Target and all the way up to New York fashion week.  In addition, television shows are featuring actors with Down syndrome.  Trailblazers are advocating for job opportunities and making a difference.  Here are some of the faces of individuals who have Down syndrome, and advocates who are paving the way.

btway

*A&E’s Emmy winning series Born this Way 🙂

“Winner of the 2016 Emmy Award for Outstanding Unstructured Reality Program, Born This Way follows a group of seven young adults born with Down syndrome as they pursue their passions and lifelong dreams, explore friendships, romantic relationships and work, all while defying society’s expectations.  In their willingness and courage to openly share their lives, through a lens that is not often shown on television, we learn they have high hopes just like anyone else. The series also gives voice to the parents, allowing them to talk about the joy their son or daughter brings to their family, and the challenges they face in helping them live as independently as possible”.

Read my exclusive interview with Sandra Assismotos McElwee (author of Who’s the Slow Learner? A Chronicle of Inclusion & Exclusion) and mother of cast mate Sean McElwee here: https://nickspecialneeds.com/?s=born+this+way

*CNN’s Hero of the Year Amy Wright of Bitty and Beau’s Coffee 🙂

bitty and beau coffee shop

CNN Heroes is a television special created by CNN to honor individuals who make extraordinary contributions to humanitarian aid and make a difference in their communities. Amy Wright started a grass-roots movement, opening up Bitty & Beau’s Coffee, which is located in Wilmington, NC. National statistics have shown that 70% of people with intellectual and developmental disabilities are unemployed. Her mission is to provide purposeful jobs that bring the community together, and helps people with and without disabilities to spend time together.

Read my blog about Bitty and Beau’s Coffee: https://nickspecialneeds.com/?s=bitty+and+bo

*Firestarter Advocating for Inclusion on Capitol Hill David Egan 🙂

Firestarters

One of the featured individuals in the book Firestarters is David Egan.  David is the first person with an intellectual disability to be awarded a Joseph P. Kennedy JR. Public Policy Fellowship, he made history by working on Capitol Hill with the Ways and Means Social Security Subcommittee. David Egan, born with Down syndrome, is a trailblazer for others who have intellectual disabilities.

David-Egan-Capitol-Hill-2011

Read more about this Firestarter David Egan and co-author Paul Eder in my exclusive interview at this link: https://nickspecialneeds.com/?s=firestarter

*We are seeing more actors and models with Down syndrome in prominent roles! 🙂

Chris Burke was a trailblazer starring in the TV series, Life Goes On:

Chris Burke 2

Lauren Potter star of Fox’s hit show Glee:

potter27.jpg

Jamie Brewer stars in American Horror Story:

American Horror Story jamie Brewer

Madeline Stuart and Maria Avila are changing the face of beauty and diversity in the world of fashion, both have walked at NY Fashion Week!

madeline stuart    maria avila

*2018 Gerber Spokes Baby Lucas Warren 🙂 

Gerber baby 2018

Read more about 2018 Gerber Baby, Lucas in my blog: https://nickspecialneeds.com/?s=gerber+baby

It’s wonderful to see more of these beautiful faces in the media.  How amazing to read about advocates who are opening up doors for employment and being applauded for their efforts!  Individuals with Down syndrome have goals and dreams, and want the same things as everyone else.  They need opportunities and to be included without barriers.  Let’s move beyond awareness about Down syndrome, towards acceptance and inclusion!

That’s what is in my noggin this week.

~Teresa 🙂

Follow my son, Nick where you will find more stories and faces of DS:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram #nickdsautism

Twitter @tjunnerstall