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

Blog #208~Vacation Tips for Parents of a Child With Special Needs

Blog #208~Vacation Tips for Parents of a Child With Special Needs

summer sand

Are you a parent of a child with special needs, that will be going on vacation soon?  If so, then this blog is for you.  It can be a lot of work ahead of time getting ready for a trip.  But it is well worth it to be prepared and have a plan in place to help your child feel more relaxed and secure.

Here are 7 Vacation Tips for Parents of a Child with Special Needs:

1. Prepare social stories and visual schedules including the mode of travel, and what is expected from your child.  Review the vacation destination venue online with your child.  This will give them an idea of where they will be going, and what they will be doing.  Print pictures of the vacation venue to create a daily activity schedule.  Visuals will provide a blueprint for your child to understand what will be happening, this will lessen their anxiety.

flying visuals

2. When booking accommodations, look for a comfortable and quiet retreat for your family.  This may mean a separate living area from the rest of your family or friends in some cases.

3. Bring medications, snacks, comfort items and highly preferred toys/sensory objects in your carry on bag.  In addition, it’s wise to pack an extra set of clothes for your child.

4. Plan short, flexible and open-ended adventures on your vacation.  Build in time for breaks as needed.

5. Work in at least a few activities that your child will love.

6. Eating familiar foods will help your child feel more at home in a strange place.  Check resturaunt menus online beforehand, especially in the case of any food allergies or dietary restrictions.  Don’t underestimate the importance of this.  Once on vacation, we forgot to buy Ranch dressing, this lead to my son having a meltdown.

7. Don’t beat yourself up if things don’t go as planned.  As much as you can, try to watch for the triggers that may cause your child to have a meltdown.  See what you can do to cut these off at the pass before things escalate.

My son Nick is 24 years old and has a dual diagnosis of Down syndrome and autism.  There are definite triggers that can lead to him having a meltdown.  Besides the Ranch dressing incident, we’ve experienced several instances where heat has caused him to lose his cool.  On two different family reunions, Nick got upset waiting in the heat for the family group pictures to be taken.  Another occasion was a city tour on a 90+ degree day. We pushed the envelope too far, trying to walk back to the car, which was a good 10 blocks away.  Nick wanted no part of it.  He got very upset and it quickly escalated to a meltdown.  In retrospect, I should have asked a family member to get the car to us.

Hot Spring, AR was extra hot that day.  Nobody is happy here…….

004

When meltdowns happen, get your child to a safe spot and allow them to recover fully.  Reassure your child that he is loved and safe.  Most important as a parent, remain calm in these situations.  Afterwards review with your family what the antecedents were, that led to the behavior.  Learn from these, so you can avoid and control them in the future.

Vacations while fun, can be challenging for a child with special needs.  Prepare in advance with comfort items, visuals, and look for possible triggers that may cause anxiety and discomfort for your child.  Build in as much predictability as possible.  Keep a relaxed and flexible attitude when approaching daily activities.  It’s okay to cut things short, if it gets to be too much.  Have a great summer, and don’t forget to pack the sunscreen!  I’ll be sure to pick up some Ranch dressing too.

sunshine

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

Blog #207~Special Needs Parents: Coping When Life Gets Tough

 a Blog #207~Special Needs Parents: Coping When Life Gets Tough

Let’s face it, being a parent is exhausting at times.  When you have a child with special needs, it’s amplified.  Sometimes you just can’t catch a break.  You have to walk on eggshells, and keep your cool, so your child doesn’t have a meltdown.  The physical needs your child may have can take its toll, zapping your energy levels each day and night.  Autism and sleep disorders go hand in hand. Endless nights of interrupted sleep will beat you down.  My son Nick is 24 years old, and has Down syndrome and autism.  I’ve got many years under my belt, of taking care of his needs.  I can hold it together pretty well and keep my patience in tact.  Believe me, Nick does try my patience daily.  But every once in a while it gets to be too much, especially when sleep is disrupted.

mombie

So how do you find ways to catch a break and re-charge?  I thought a lot about this over the weekend.  There are times in life where you start to get your footing, but the next thing you know, a few more hurdles block your path.  In the worst of times, when my son was going through puberty and having multitudes of meltdowns, I questioned how I was going to survive.

I repeated this mantra to myself……

winston churhill quote

Here are 7 things to keep in mind which will help when you feel stressed out…..

  1. It’s totally NORMAL to feel overwhelmed.
  2. When you do feel stressed out, seek BALANCE and prioritize what MUST be done and what can wait.
  3. Stop feeling GUILTY.
  4. Give yourself a BREAK, even if it’s a mini break to keep you at your best both emotionally and physically.
  5. Ask for HELP from family, sitters and respite caregivers. You can’t do it alone.  Delegate household chores to all family members.
  6. CONNECT with support groups who better understand what you are dealing with on a daily basis.  Being a parent of a child with special needs can be lonely.  But you know what, you are NOT ALONE.
  7. Keep GRATITUDE in your heart.  Every day look for the blessings.  The good stuff will keep your focus positive.

This weekend was very busy, and my usual Saturday catch up routine was interrupted.  That evening I was looking for a clean pair of underwear for my son.  I dug through 3 clean laundry baskets that had yet to be put away.  Not one single pair could be found.  It was late, I was tired, and it was all too much.  While Nick was in the shower, I went into the closet and started yelling, “T, you suck.”  And yes, the swear words were flying.  Nick ended up in a pair of his Dad’s boxer briefs that were on the baggy side.  I spoke into the Amazon Echo, “Alexa, put F-ing underwear on the shopping list!”  Alexa acknowledged the request, without using the expletive, as she is polite that way.

The next day, Nick went to brunch with Kelsey, his respite caregiver.  I took my own advice, and put myself first.  I also took a moment to be grateful that Nick was fully toilet trained (no easy feat), and able to wear underwear.  Before making a Wal-Mart run for groceries and F-ing underwear, I headed over to my happy place, DSW Shoes. I was loaded down with preferred customer coupons and a gift card that I got for Mother’s Day.  It was only a twenty-minute mini break, but it did me a world of good!  Oh and I came out treating myself with two new pair of cute sandals. 🙂

Being a parent of a child with special needs carries a unique set of responsibilities that can be overwhelming.  Know that you are not alone, and that it’s essential to give yourself a break without guilt.  Even in the darkest days and nights, things will get better.

So I leave you with this final mantra when you are taking on what seems to be the impossible…..

breathe chapter quote

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

Blog #206~ Stop Procrastinating

Blog #206~ Stop Procrastinating

no-procrastination

“Procrastination is the thief of time.”  It’s not always about being lazy, sometimes it is rooted in other causes.  So why do we procrastinate?

procrastination-powerpoint-14-638

Being a parent of a child with special needs, brings additional pressure.  There are many responsibilities of being their caretaker, that are lifelong.  My son Nick is 24 years old and has a dual diagnosis of Down syndrome and autism.  Taking care of my son is a never ending job.  Yes, sometimes I have check out and binge watch shows on HGTV and Bravo.  We all need some time to escape, but not at the expense of shrugging our responsibilies.  Perhaps, I’m writing this piece to remind myself to be more disciplined.   So, how do you kick the procrastination habit?

Here are 5 Tricks to Kick the Procrastination Habit:

1. Set Goals

Define what needs to get done and hold yourself accountable.  Re-assess your goals on occasion to make sure your priorities are where they need to be at this point in your life.  Commit to your goals!

#goals

2. Define Mini-Tasks

Breakdown your goals into smaller, more manageable tasks.  Ask yourself what steps need to happen to reach your goals.  For example, say you want to create and organize an IEP binder for your child.  An IEP (Individualized Education Plan) binder can help you prepare for IEP meetings and better collaborate with teachers and other IEP team members.  Break down creating this binder with tabs for each section (communication, evaluations, copy of IEP, report cards/progress notes, sample work, and behavior).  Breaking this project down into mini-tasks will be less overwhelming and easier to handle in stages.

iep-binder-1740x979

Click here get started on your IEP binder:  https://www.understood.org/en/school-learning/special-services/ieps/how-to-organize-your-childs-iep-binder

3. Make Lists

I use to make fun of all the lists my Mom had going around our house, growing up.  But you know what, Mom was right, they do keep you organized and focused.  To do lists help track your goals.  There is a real satisfaction to checking off items after you’ve completed the tasks.  It rebuilds faith in your own abilities when you complete action items on a given deadline.

checklist

4. Eliminate Distractions

Cell phone alerts, social media, TV and a cluttered work space will distract you from working.  Free yourself of these, so you stay focused on your tasks.  Clutter is the enemy that is both dibilitating and anxeity ridden.  This weekend I cleaned out and purged my bathroom drawers and cabinets.  Why?  Well, A=It was raining and B=I couldn’t find one bobby pin.  The end result, I threw away a big bag of stuff I wasn’t even using.  I won’t be rummaging around the clutter, and wasting valuable time in the mornings.  Oh, and I found a lot of bobby pins 🙂

5. Carve Out Time That Works For YOU

You know yourself, and when your energy level and focus is most productive.  I say this all the time to my fitness class participants.  I’m NOT a morning person, so I do everything I can the night before that I can to prepare for the following day.  This includes laying clothes for myself and my son, jotting notes in his communication journal, and planning my fitness class agenda for work.

Nick’s grooming bin…..

photo (118)

It’s also important when you have a child with special needs, to get things done when it is quiet so you can concentrate.  I never try to write or edit when my son is home.  Instead, I take advantage of the time when he is at his adult day program to do the tasks that require a lot of focus.  Also, be sure and carve out free time for extra curricular activities. Find the balance of both a schedule and unscheduling.

writing-schedule

Breaking the habit of procrastination can be done by setting goals, breaking those down into mini-tasks, making lists, eliminating distractions and carving out time that works for you.  Building in flexibility, forgiving yourself, and rewarding your accomplishments are positive ways to keep up your momentum.  Stop procrastinating and make good on your promises.  Share your goals and tasks with friends and family who can encourage you and help you make good on your promises.

The wise words of Benjamin Franklin said it best, “You may delay, but time will not.”

That’s what is in my noggin this week.  Now where is that list pad?  I’m ready to get things done!

~Teresa 🙂

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

Instagram @ #nickdsautism

Twitter @tjunnerstall

 

 

 

 

 

 

 

 

 

 

 

Posted in Autism, Autism Spectrum Disorder (ASD), Behavior/ ABA, Dual Diagnosis Down syndrome and autism

Blog #205~Post Mother’s Day Advice

Blog #205~Post Mother’s Day Advice

Being a mom can often result in feelings of guilt, and second-guessing decisions that you make for your children.  As a mother of a son with special needs, this is even more heightened.  Now, you see it on social media.  There are so many individuals with special needs, succeeding in new therapies, Special Olympics, and going to prom.  This creates added pressure to do even more for your child.  After 24 years of raising my son Nick, who has a dual diagnosis of Down syndrome and autism, I have gone through all these feelings of not doing enough.  This week, I ask that you STOP and take a breath Moms!

unplug it quote

After you stop and take that breather, you can re-boot and move forward, and re-evaluate what your child needs at this point in their lives.

*Are the current therapies and interventions effective?

*What other programs are available, that might be a better fit?

*What type of activities can be incorporated at home?

In the following blog, I outline how to re-evaluate current activities along with implementing effective TEACCH method ( Treatment and Education of Autistic and Communication which is an evidence-based service, training, and research program for individuals of all ages and skill levels with autism spectrum disorders).  The TEACCH method is a structured program that helps individuals with ASD to learn, function and reach their goals.  Incorporating TEACCH activities at home can be a time saver, instead of running around multiple times a week for ABA (Applied Behavioral Analysis) therapy.

Click here to view:  https://nickspecialneeds.com/2017/08/07/blog-180special-needs-momslet-go-of-the-guilt/

Nick doing TEACCH Method at home 🙂 (video version available on our social media sites listed below)…………..

nick folding washcloths

For more information about Applied Behavioral Analysis (ABA) TEACCH Method click here: https://www.appliedbehavioranalysisprograms.com/faq/what-is-the-teacch-method/

My advice post Mother’s Day, is to take a deep breath and re-evaluate current programs for your child.  Decide which are effective and relevant, at this time in their lives.  Are these therapies and interventions the most efficient use of time for your family?  Prioritize and determined what you can scale back on.  Consider implementing the TEACCH activities at home to save time.  These activities help to build new skill sets, confidence and independent living.  Finding the balance for your child with special needs along with your family is key.  It will also help you as the mom to feel less guilty, and more confident as a parent.

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 Adult Day Programs for Special Needs, Autism, Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism

DS-ASD, Nick’s Spring Update

DS-ASD, Nick’s Spring Update

spring flowers

The trees and flowers are budding and blooming here in the Chicago area.  A long overdue, and highly anticipated spring has finally arrived.  Here is what my son, Nick has been up to this spring.  Nick is 24 years old and has a dual diagnosis of Down syndrome and autism.

Nick attends an adult day program which provides enrichment activities both in-house and out in the community.  The structured curriculum and schedule of this program serves Nick, and his fellow clients well.  Community trips to local parks, restaurants, shopping for the weekly cooking segment are integrated throughout the week.  They have also been doing gardening and working on craft projects that will be sold next week, at the Garden and Craft Sale.  Nick enjoys going to this program, and looks forward to going to it daily.

Outside of his adult day program, Nick likes to go to the movies, parks, library and out to eat with his personal support/respite caregivers.

It’s the middle of April and a jacket is still required……

nick swing neighborhood

Oh happy day 🙂

Nick taco bell outside

For the past couple of years, Nick and his respite caregiver Jodi, have joined up with Christopher and his caregiver for date night, each Thursday.  These two guys have a lot of laughs together at the library, and going out to eat afterwards.  His buddy is moving out-of-state, so it was a bittersweet final date night for the two of them…….

Nick and Christopher saying goodbye, it’s the end of an era…..

nick and christopher

March is Down Syndrome Awareness Month, and 3/21 also being World Down Syndrome Day.  Nick and I spent this month doing advocacy and awareness about Down syndrome.  One campaign we were a part of was with Noah’s Dad, #provethemwrong which highlights the many awesome things that people with Down syndrome are doing in the world.  To follow Noah’s Dad and #provethemwrong click here for more information: http://noahsdad.com/prove-them-wrong-tee-shirt/

Nick Prove Them Wrong

Our family also supports The National Association for Down Syndrome (NADS) which is based in Chicago.  We are sponsors for the annual NADS Bowl-a-thon fundraiser.  Nick had a blast at the event :)……

Nick NADS bowlathon

Over the past weekend, we made a trip to Ohio to celebrate Nick’s cousin’s graduation from Bowling Green State University.  Nick is highly social, and loves spending time with his cousins, aunt, uncle, and grandparents.  Before the early 9am graduation ceremony began, in the crowded Stroh Center, Nick did his part to test a fire alarm cover.  The loud buzzer blared for a few seconds, before his Dad could close it back down.  It was a close call, but at least he didn’t pull the actual fire alarm.  He’s cheetah fast, and as I’ve said before, it’s Nick’s world, the rest of us are just trying to keep up.

Congratulations and elbow bumps to Nick’s cousin, Sam, well done!…….

Nick and Sam Graduation

Relaxing on the deck and enjoying a warm, spring day with his cousin, Anna….

Nick and Anna

Spring is a time of renewal, and taking in the beauty of nature coming back to life after a cold, harsh winter.  It feels so good to get outside and power walk again.  These walks are a time for me, to reflect on life’s blessings.  I feel very fortunate that my son is healthy, happy and enjoys his life as a young adult having Down syndrome and autism.  Yes, there are many challenges, and he certainly keeps us all on our toes.  But the joy and humor that Nick exudes, far outweighs the behavior challenges we incur daily.

It’s almost Mother’s Day, which is the official “green light” to plant flowers and vegetables here in the Chicago area.  I’m ready to fill up the clay pots with some color, on the empty pallet of the deck.  I can’t wait to put the tomato plants into the soil.  Gardening is my way of relaxing, and shaking off daily stress.  It’s so important to carve out time for yourself, and restore what can sometimes be taken away, by the demands of parenting a child with special needs.  Wishing all the moms on the front lines, a very Happy Mother’s Day.   My hope is that you make time to enjoy something on your own, that is fulfilling and relaxing each day.  That’s what is in my noggin this week.

Happy Spring everyone 🙂

~Teresa 

Follow Nick:

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, IEP (Indivdualized Education Plan), Parenting Special Needs

Blog #204~ Lessons Learned from the Last Lecture

Blog #204~Lessons Learned from the Last Lecture

Randy Pausch was a professor at Carnegie Mellon and author of the national bestselling book, The Last Lecture.  He encouraged his students to attempt hard things and not worry about failing.  He would give out “The First Penguin Award” to the team who took the biggest gamble trying new ideas and technology, but failed to achieve their goals.  “This award celebrated out-of-the-box thinking and using imagination in a daring way.”  The title of this award came from the way that penguins jump into the water that might contain predators.  Somebody has to be the gustsy, first penguin, and take a bold leap into the unknown.

fail spectacularly

The takeaway is this, it’s important to attempt hard things and  you can expect to hit brick walls.  That is when you gain experience.

“Experience is what you get when you didn’t get what you wanted.”

This quote struck me as I was reading The Last Lecture over the weekend.  My son Nick, was born and diagnosed with Down syndrome.  Years later, he recieved a secondary diagnsosis of autism.  I didn’t get the “normal child” that I expected.  My path raising Nick has been very different then I had planned.  But along the way, over the past twenty-four years I’ve gained a great amount of experience in navigating my son’s journey.

Randy Pausch, a computer science professor gave his last lecture after receiving a diagnosis of terminal cancer, leaving behind a wife and three young children.  His book, The Last Lecture, co-written with Jeffrey Zaslow is a summation of everything Randy believed with some valuable lessons in “overcoming obstacles, enabling others, and seizing every moment.

There are so many lessons offered by Pausch in The Last Lecture.  I want to share a few that resonated with me, as a parent of a child with special needs.  When my son, Nick was born twenty-four years ago, I made some choices on how I was going to manage life.  I was dealt a set of cards, that I didn’t expect.  But soon realized, that I would have to play the hand differently.  This meant getting support to help my son reach developmental milestones and creating a home environment that supported his growth.  I also learned to reach out to parents, therapists and teachers with experience to help me understand how to help my son become the best he could be.

Randy Pausch cards dealt with

Another valuable lesson is in the approach to life when facing adversity.  Randy says, “Make a decision, are you going to be a Tigger or an Eeyore?”  A.A. Milne’s beloved Winnie-the Pooh characters are in two different camps.  I’d choose fun-loving Tigger over grumpy Eeyore every time.  Optimism can take you much further in life!

Randy-Pausch-Pooh-Quote

Here are a few more nuggets of wisdom from Randy Pausch, and how they relate to being a parent of a child, with special needs.  I found these lessons to ring true, especially navigating a dual diagnosis of Down syndrome and autism:

“All you have is what you bring with you.”

I understand all too well the need to be prepared for whatever situation the day may bring with my son.  What do I need to bring and what should I anticipate?  This could be anything from an extra set of clothes, spare iPod, PECS book, AAC device, snacks, Kleenex, stim toys and more.  Identify possible trouble spots/ triggers for meltdowns/messess and come up with ways to avoid these incidences.  Also, have a contingency plan in case as Randy says, “All hell breaks loose”.”

“All you have to do is ask.”

Randy tells a story about his Dad wanting to ride in the nose cone with the driver on the monorail at Disney World.  His Dad assumed they didn’t let regular people ride up there.  Randy told his Dad he had a trick and asked if his Dad wanted to see it.  He walked up the driver and asked, and the driver said yes.  You never know unless you ask, and this is true from my experiences working with doctors, therapists, teachers and other IEP members.  Ask for IEP drafts before the meeting, and to be included in your child’s goal planning.  Ask that the parent concerns (that you’ve written ahead of time), be put directly in the IEP at the beginning of the meeting.  These concerns will be a part of what drives the IEP.  Ask the doctor for whatever your child might need for their health like, prescriptions for therapy, nutritional supplements, evaluations for orthotics and to get all test results as soon as they come in.

“Start by sitting together”

This is essential when going to your child’s IEP (Individual Eduction Plan) meetings.  Randy’s approach to working with a group of people is simple.  Lay all the cards face up on the table and say to the group, “Ok, what can we collectively make of this hand?”  He offers a few tips for a successful group meeting like having optimal meeting conditions (make sure no one is hungry, cold or tired).  I’ll add in cramped rooms with  small chairs, as this has happened to me in past IEP meetings. Randy also adds, to let everyone talk, check your egos at the door and praise each other.  Finally phrase alternatives as questions, so instead of saying, “I think we should do A and not B” try saying,  “What if we did A and not B”.  This allows the team members to offer comments rather than defend their choice.  It opens up the discussion to get input from the whole IEP team.

The lessons that Randy Pausch shares in his book, are valuable.  Here are my takeaways as they relate being a parent of a child with special needs:

*Don’t be afraid to think outside the box and try something daring.

*If you hit a brick wall, learn from it and gain more experience.

*You can’t change the cards that were dealt, but you can change how you play the hand.

*Your approach in playing that hand can be with a positive or negative attitude, it’s your choice.

*All you have to do is ask.  They might say sure, why not.

*Start by sitting together, when it comes to IEP’s the team should come together to be solution oriented, not problem oriented in collaboration approach.

Thank you Randy Pausch for the valuable lessons you shared in The Last Lecture and for the reminder to take what you have learned so that you can help others who might be starting down the same path.

And as you navigate your path always remember this…..

Randy Pausch spending time

  That’s what is in my noggin this week.

~Teresa 

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice of Autism

Instagram #nickdsatuism

Twitter @tjunnerstall

 

 

Posted in Autism, Autism Spectrum Disorder (ASD), Dual Diagnosis Down syndrome and autism

Blog #203~ 100 Facts About Autism

Blog #203~ 100 Facts About Autism

autism did you know

As Autism Awareness Month winds down, my goal is to share information that will lead to a better understanding and acceptance for persons having autism.  I found a great link with 100 facts about autism, from Action Behavior Center.  It is a quick and easy list you can read through, in less than 10 minutes.

100 FACTS ABOUT AUTISM–  http://www.actionbehavior.com/100-things-to-know-about-autism-spectrum-disorder-in-2018/

Better understanding about autism can help individuals like my son Nick, be accepted and appreciated in our society.  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, Parenting Special Needs

Blog #202~ Down syndrome, A New Beginning

Blog #202~ Down syndrome, A New Beginning

So this just happened, I flew back to Texas over the weekend to be with my niece, who is also my God-daughter.  Courtney recently gave birth to twin boys.  Shortly after their birth last December, she called me with the news that one of the babies might have Down syndrome. The first thing I felt was excitement inside, knowing that God has many blessings coming her way.  I told Courtney that everything was going to be okay, and that I’d be there for her every step of the way.  I know this to be a fact, because I have been blessed for the past 24 years with my son, Nick.

My niece didn’t know that one of her twins would have Down syndrome until after she gave birth.  Just as I did, the initial shock can take your breath away and a myriad of emotions come at you in waves.  However, like me she has rolled up her sleeves and embraced this diagnosis fully.  I couldn’t be more proud of her.

The twins Gannon and Greyson 🙂

Gannon and Greyson

Courtney jumped right in becoming an advocate for her son, Gannon.  Last month, she gave a presentation to her older son’s elementary school class on World Down Syndrome Day……

Gannon WDSD

For World Down Syndrome Day, Courtney had special shirts made for her immediate and extended family, as well as friends…….

Courtney and family

Here’s my son, Nick wearing his shirt to support #gannonsjourney and World Down Syndrome Day….

Nick Down right perfect

There is a lot of love felt in their home, along with a load of testosterone, with four boys under one roof.  Her two little dogs and cat lay on the couches close by, seemingly like protectors providing comfort as we sat and visited.

Gannon and me

It was a great weekend holding, feeding and loving on the twins, along with a few games of Battleship, Candyland, Toilet Trouble and snap chat photos with the older boys.  In between all of this, we had a chance to talk about our experiences together.  During the course of these conversations, I flashed back 24 years ago when I gave birth to Nick.  I told Courtney and her husband Patrick, how the pediatrician pointed out the initial markers that might indicate my son could have Down syndrome.  My doctor gently showed me the brushfield spots in my babies eyes, the larger gap space between the first two toes, and the feeling of low muscle tone in his body.  Courtney gasped when I mentioned my pediatricians name, she thought I was joking.  It turns out that they have the same pediatrician as I did!  Not only that, her husband (who also lived in this same area outside Houston) had Dr. K as his pediatrician growing up.  Courtney started to cry as we found the similarities in our lives being so serendipitous.  They were happy tears.

Who would ever predict that this little niece and God-daughter of mine would follow such a similar path?  At the moment this photo was taken, 28 years ago I was just a doting aunt to her…..

Courtney and me

Here we are 29 years later…..

Courtney Gannon and me

In December, after the twins were born, her pediatrician pointed out similar markers of Gannon possibly having Down syndrome.  I told Courtney over the phone, that she had this.  She was already ahead of the game, with her experience having Nick as her cousin.

Courtney and Nick, 1994…..

courtney and nick

Courtney and Nick, 2010………

photo (116)

I handed my niece this journal, on Saturday.  It felt as though I was passing the baton over, as she starts her own journey…..

Journal

The journey will be filled with highs and lows as she navigates her son having Down syndrome.  As the pen moves across each page, her eyes may be filled with tears during the struggles as he grows.  But there will also be many smiles when he triumphs the milestones of crawling, sitting up, walking, feeding and so much more.  Each benchmark will take longer to reach and require much more work.   But that is what makes these victories even sweeter.  My niece is just beginning this new path, and I both smile and take a deep breath inside, knowing what lies ahead.  My son has changed my life forever and filled me with God’s grace.  Like his cousin Nick, Gannon will touch many lives and teach lessons of gratitude in the process.

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

Follow Gannon #gannonsjourney

 

 

 

 

 

Posted in Autism, Autism Spectrum Disorder (ASD), Dual Diagnosis Down syndrome and autism

World Autism Awareness Day

World Autism Awareness Day

Autism Awareness Day

April 2nd is Autism Awareness Day.  “Autism spectrum disorder (ASD) is a complex developmental disorder that affects a person’s ability to communicate and interact with others. More than 3.5 million Americans currently live with ASD, and 1 in 68 children are born with a variation of it.”  With this staggering statistic, it’s likely that you have encountered an individual on the autism spectrum.

Not just today, but the entire month of April is Autism Awareness Month. During this month advocated seek to raise awareness,  understanding, acceptance, inclusion and self-determination for all individuals with ASD.

autism awareness 2016

One of the most famous and influential individuals with autism is Temple Grandin. “Temple Grandin is an American professor of animal science at Colorado State University, consultant to the livestock industry on animal behavior, and autism spokesperson. She is one of the first individuals on the autism spectrum to publicly share insights from her personal experience of autism. She invented the ‘hug box’ device to calm those on the autism spectrum.”

Temple Grandin quote 2“Based on personal experience, Grandin advocates early intervention to address autism and supportive teachers, who can direct fixations of the child with autism in fruitful directions. She has described her hypersensitivity to noise and other sensory stimuli. She claims she is a primarily visual thinker, and has said that words are her second language. Temple attributes her success as a humane livestock facility designer to her ability to recall detail, which is a characteristic of her visual memory. Grandin compares her memory to full-length movies in her head, that may be replayed at will, allowing her to notice small details. She also is able to view her memories using slightly different contexts by changing the positions of the lighting and shadows.  Her insight into the minds of cattle has taught her to value the changes in details to which animals are particularly sensitive and to use her visualization skills to design thoughtful and humane animal-handling equipment.”  (Wikipedia)

Today and throughout this month, advocates ask that you promote autism awareness and acceptance on social media, and encourage community support and understanding for individuals and families living with autism.

Autism support groups across the country are working with businesses to sponsor sensory friendly events.  Two of these are:

AMC movie theatres https://www.amctheatres.com/programs/sensory-friendly-films 

Chuck E. Cheese https://www.chuckecheese.com/deals-offers/sensory-sensitive-sundays

Although Autism Awareness Month is a great time to advocate for understanding, acceptance and inclusion, it’s essential to advocate for children, and adults, with autism year-round.  That’s what is in my noggin this week.

~Teresa 🙂

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Posted in Down syndrome, Down Syndrome Awareness

Blog #201~Baby with Down syndrome named 2018 Gerber Baby

Blog #201~Baby with Down syndrome named 2018 Gerber Baby

The 2018 Gerber baby was just named last month, and he is Lucas Warren, the first child with Down syndrome to receive the honor.  The 18-month-old from Dalton, Ga., was selected as “2018 Gerber Spokesbaby” from more than 140,000 photos submitted by parents.

Lucas’ winning smile and joyful expression won our hearts this year, and we are all thrilled to name him our 2018 Spokesbaby,” Bill Partyka, president and CEO of Gerber, said in a press release. “Every year, we choose the baby who best exemplifies Gerber’s longstanding heritage of recognizing that every baby is a Gerber baby, and this year, Lucas is the perfect fit.

Gerber baby 2018

The original Gerber baby was Ann Turner Cook, who recently celebrated her 91st birthday. The black-and-white sketch of her face from 1927 became Gerber’s iconic logo. Since then, the company has received a myriad of photos from parents who see their own babies in the famous sketch.

Gerber Baby now and then
Eight years ago, Gerber launched the Photo Search to celebrate these adorable babies.  Lucas’s winning smile and joyful expression won their hearts, this year.  His mother, Cortney Warren was extremely proud:

“This is such a proud moment for us as parents knowing that Lucas has a platform to spread joy, not only to those he interacts with every day, but to people all over the country.
We hope this opportunity sheds light on the special needs community and educates people that with acceptance and support, individuals with special needs have the potential to change the world ― just like our Lucas!” 

Congratulations to Lucas!  Thank you Gerber for recognizing the beauty in all children, and taking an inclusive stance by selecting a baby with Down syndrome.  Every baby really is, a Gerber baby!

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