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

DS-ASD~Mom,Take Care of Yourself

DS-ASD~ Mom, Take Care of Yourself

It’s May and the school year is almost done. This month is busy, and parents get pulled in many directions. Being a mom of a special needs child for 25 years, I know first hand the guilt associated with not doing or being enough for my family. My son Nick is 25 and has a dual diagnosis of Down syndrome and autism (DS-ASD). Over the years, I’ve learned how to cope with the stress and guilt, which can be debilitating. You are no good to your family if you don’t take care of yourself.

Mom quote first step

My advice to moms out there is this- Cut yourself some slack and take care of yourself.  Life is not perfect, none of us are; just let go of that notion. 

Here is a blog I wrote a couple of years ago with 3 tips on how to take care of yourself:

https://nickspecialneeds.com/2017/05/08/blog-174-momtake-care-of-yourself/

mom quote body, mind soul

You can’t pour from and empty cup, so remember to keep yours filled. Your family needs you at your best and you will have more to offer them. Make it a priority to carve out some time each day to take care of yourself.

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 #230~Special Needs Moms, Advice from the Front Lines

Blog #230~Special Needs Moms, Advice from the Front Lines

autism war girl

I feel like I should be doing more.

My child isn’t reaching his IEP goals.

Will my child ever get toilet trained?

I’m not spending enough time with my other kids.

I can’t keep up, I’m exhausted.

Parenting a child with special needs brings on additional challenges and stress. As a mom of a special needs child for 25 years, I’ve had negative feelings of uncertainty, resentment, frustration, sadness, inadequacy and loneliness. Such feelings lead to the worst of all; guilt. We are only human, and it’s understandable to have those emotions as a mom.

mombie

My son, Nick is 25 years old and has a dual diagnosis of Down syndrome and autism.  I  tried my best not to compare his growth and milestones to other children.   Nick had very low muscle tone, which is a trait associated with Down syndrome:

*He didn’t sit independently until well after age one.

*Nick didn’t walk or chew hard textured foods until he was 3 1/2 years old.

*Worst yet, he wasn’t independently toilet trained until age 13.

There were many times where those feelings of inadequacy and uncertainty creeped in over the years.  I questioned myself often, about what more I could do for my son. You try your best, but feel like you are coming up short.  I’ve been there many times, I get it! Take a breath and forgive yourself. There is no such thing as a perfect mom.

Nick, age 2 and his brother Hank age 4…….

AIOtmp (19)

So here is my advice from the frontlines.  First of all, remember that YOU ARE NOT ALONE. When you feel like you are alone, seek out a support system.  There are many  Down syndrome support groups across the country, online and on Facebook that are specific to the diagnosis of your child. Find that group of parents, going down a similar path as you are; they are the ones who “GET IT”.

sign support

When you feel lost, inadequate and overwhelmed, ask for help. Find the experts, and ask other parents, They will give you information and strategies to better equip  yourself to deal with the unique challenges of raising a child with special needs.

help button

Another struggle and dialogue that plays inside our heads as moms is, “But I don’t have time for me.”  Taking some “me time”, when the laundry is piled up, dishes to be washed and a myriad of other chores on the list, leads to feelings of guilt. But, it’s important to pull away, and re-charge your battery. Take time to do something you enjoy. Go have a cup of coffee or take a walk with a girlfriend, exercise, garden, go to Target and walk every aisle; do that thing  that will help restore you.

Pour Cup

Take care of yourself, Mom! When you feel overwhelmed find a support system, ask for help, and remember  it’s okay to disengage and recharge yourself. There is no such thing as being the perfect mother, so take it easy on yourself.  That’s my advice for special needs moms, on the front lines and what’s in my noggin this week.

Happy Mother’s Day 🙂

~Teresa

Follow Nick:

Facebook and Pinterest @Down Syndrome With A Slice Of Autism

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

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 more 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. Consider incorporating TEACCH activities at home, instead of running and around, and spending more time in multiple therapy clinics.  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 :):

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 #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, and have  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. Striking a balance, keeps you on an even keel.

As Mother’s Day approaches, my hope is for all moms to: 

*Let go of the guilt

*Make time for yourself

*Find balance and resist the urge to get everything done

Take 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 Autism, Behavior/ ABA, Down syndrome

Blog #94~Advice for Special Needs Moms

Blog #94~Advice for Special Needs Moms

I’ve been raising a child with special needs for 20 years. My son, Nick has Down syndrome and was later diagnosed with autism. Being a parent is rewarding but also challenging and stressful. Having a child with special needs amplifies things even more. I’ve felt ashamed, exhausted, and frustrated piling on mounds of guilt along the way.  With Mother’s Day coming up I’ve been thinking about a few things. What advice would I give to that 33 year old mom back in 1994?

Joleene Pic

Advice for Special Needs Moms- 5 Things I’ve learned

1.  Let go of being the helpless victim. Take back control and commit  yourself to action. Ask for help and accept help from family, friends, teachers, therapists, support groups and special needs agencies.

2.  Adopt a new attitude when you feel bogged down.  How about this mantra? “Today I will do just one thing to move me forward to where I want to be.”

3.  Learn from others but set your own course. It’s easy to be overwhelmed when you see other moms trying gluten free, casein free, organic dietary programs, experimenting with essential oils, driving all over town to ABA behavior/OT/PT/Speech therapy programs and recreational activities. Forgive yourself, let go of those feelings of inadequacy.

4.  Which leads right into GUILT!  Society’s expectations don’t have to be yours. Don’t let anyone pack your bags for a guilt trip.

pintrest cartoon

5.  Take time to breathe, pray, meditate, exercise and feed your soul. A rested mind, body and spirit will help you navigate those rough, rocky roads.

zen

Do I follow this advice every day? Hardly, this morning I procrastinated  waiting until Nick ran out of his meds before making  a doctor appointment. I also threw out a package of moldy hot dog buns buried in the pantry. The floor hasn’t been mopped in two weeks and I sat around like a slug watching this movie for the umpteenth time with Nick yesterday….

The other guys

Do I feel guilty about it? Not near as much as I use to. The mounds of guilt have been reduced to a few, small piles I step in from time to time.

So, to all the special needs moms out there I wish you a Happy Mother’s Day. Slow down and do something you enjoy.  Go have a glass of wine with your girlfriends. Take a day or at least an afternoon to do nothing but fun things you enjoy. Please carry that with you each day as you make your way down that rocky road. That’s what is in my noggin this week.

~Teresa 🙂

Nick Sox game

Posted in Autism, Down syndrome, Recreation/Leisure and Special Needs

Blog #54~Mom Helpline

Blog #54~Mom Helpline

What did I want for Mother’s Day?  ……………………. Just the sound of crickets.…..

I applaud the moms who enjoy breakfast in bed served by their kids.  I am not there anymore.  Really all I want is a little peace.  For me, it is having the luxury to take some time to do simple errands. Not rushing at a mad pace. It’s a gift just knowing that someone is watching Nick so I don’t have to bust my ass to get home.   And so I did.  I took my time after teaching two spin classes. I drove out of work slowly taking a chill pace towards Oswego.  I  stopped off at Ulta, Kohls, Target.  Oh how I love you three amigos!  Ladies, you are with me here, right? 🙂

So I got my wish, to breathe, stretch my arms out and enjoy doing what I like.  I also received a nice handmade gift from Nick.

pinecone birdfeeder

It lasted less than a day hanging on the shepherds hook.  A menacing squirrel plucked it off and darted across the yard holding it in his mouth.  Al got my favorites,  Yankee Candles and a new fountain for the deck.  That’s how I get my Zen on.

zen

While Nick showers me with little kisses, his older brother is more understated. Hank quietly posted a message on Facebook, “Happy Mother’s Day, Madre!  You’re the best.”

photo (122)

Later he emerged out of the shower clean shaven and said, “This is your mother’s day gift.”  He knows exactly how to win his Madre’s heart.

While I was out driving yesterday and I pondered on what to write about for this week.  How is being a mom of a child with special needs different?  The images of my all my fellow warrior moms came to mind.  The path we were given is worn with sleeplessness that extends for years.  The basic milestones like eating solid foods, walking, talking, and potty training take longer to reach.  Some of these may never be met. The ones that do get met are sweet and savory.  Warrior moms become experts on their child’s diagnosis and IEP’s (Individualized Education Plans.)  They learn a whole new vocabulary of words from doctors, educators, speech, occupational and physical therapists.  They juggle schedules to all of these therapies and carve out time to attend conferences and seminars to learn more about how to improve the quality of life for their child. They become advocates for their child and help others who follow behind them.  Those with children who have behavior problems have to shift gears during a mid laundry fold and clean up a splatter or cut a meltdown off at the pass.

This is just one of many things Nick has dumped out.  For the full list check out Blog #3~Getting Your Goat, located in the April 2012 Archives!

photo (108)

Sometimes the meltdowns just happen and the warrior mom has to maintain patience while their child is hitting, biting, pinching, kicking and destroying everything in their path.  It’s not all doom and gloom.  Having a son like Nick who has Down syndrome and autism can also bring sweetness, innocence and unconditional love.  That is what keeps me fueled as I take a breath and get ready for another day.

photo (116)

What can you do to help a mom with a child who has special needs?  It means a great deal when I get a message, text or card.  Knowing that someone is thinking about you can really make a person’s day.  Offer to babysit or help a mom find respite care. “The Care.Com Team” provides a list of caregivers who have experience working with special needs children. Watch for signs that a family is becoming to isolated.  Sometimes being in the trenches, we might not realize how bad things have gotten. During the height of Nick’s puberty period, my in-laws (Jim and Theresa) saw that we were in over our heads. They found some resources and parents to help us find a new path for dealing with the difficult problems we were having.  Reaching out and finding support is essential.   This can be through a local group like NADS (National Association for Down Syndrome).  There are many groups online and through Facebook that I have found to be helpful such as “MyAutismTeam,” “Circle of Moms,” and “Mom2Mom” which has a hotline 1-877-914-Mom2.  There are many more listed under my resource page.

Today there is no school so I wasn’t sure how well I would be able to concentrate to do this piece. Nick was up earlier playing his iPod loudly and pushing buttons as I tried to sleep with one eye open. Over an hour later he crawled in bed next to me.  Surprisingly, he is taking a page out of his brother’s book, still sleeping in now. 🙂

photo (119)

It’s 11:00am and all I hear is the dull hum of the refrigerator and the sound of my fingers tapping on the keyboard.  No iPod or Thomas the Tank Engine blaring, no water faucets running full blast, no phone intercom or microwave buttons being pushed.  Just crickets…………

photo (115)

Cheers to all you moms out there and may your Mother’s Day wishes come true. That’s what is in my noggin this week.

~Teresa

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

Blog #230~Book Review: Scoot Over and Make Some Room

Blog #230~ Book Review: Scoot Over and Make Some Room 

My recent summer read– Scoot Over and Make Some Room: Creating a Space Where Everyone Belongs, by author and Instagram star, Heather Avis is a must read. She is the mother of 3 adopted children, two with Down’s syndrome and one of color.  Here is one review from her book that speaks volumes:

“In a world of divisions and margins, those who act, look, and grow a little differently are all too often shoved aside. Scoot Over and Make Some Room is part inspiring narrative and part encouraging challenge for us all to listen and learn from those we’re prone to ignore.”

Each chapter in the book Scoot Over and Make Some Room extends the challenge to make room for not only individuals with Down syndrome but way beyond to all individuals with different abilities, ethnicities, race, viewpoints and perspectives. Heather’s book is filled with humorous stories, challenges and lessons she has learned raising her 3 children, navigating IEP’s, inclusion and acceptance. But this book dives down much further, by challenging the reader to look into their own lives and broaden your understanding and compassion towards people who may be different from you.

My son Nick is 26 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). In my book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism @ https://amzn.to/2W3Un6X  there are many stories about times where I would brace myself in public. Countless times I would apologize for my son’s seemingly inappropriate behavior, and yes like Heather have a moment where the pants have gone down, 🙂

Heather tells about the “pants down in the park” episode that was highly inappropriate (and a one-time occurrence) with her daughter Macyn. I can attest to the need to be on high alert and cringing at times. Macyn is a very spirited and outgoing girl who likes to engage with strangers by waving and sometimes asking “WHATCHA NAME?” This happened once at a hip LA restaurant. This raises a good question: Is this behavior inappropriate or just different than the social norm? Why are we so fearful to interact with individuals who have an intellectual or developmental disability? Often it is fear of the unknown and being uncomfortable around someone who may speak or act differently.

Heather writes this powerful message in her book:

“We fear the unknown. And unfortunately, until we create space for people with physical and intellectual disabilities to show up exactly as they are and give them permission to interrupt our social norms, they will continue to be unknown and we will continue to be fearful,”–Heather Avis

What a profound message this is to society and lesson about acceptance. Personally, I feel that the world could use more kind interactions like saying “hi” and “WHATCHA NAME.”  Obviously, we can all agree that “pants down in the park” is an inappropriate behavior. But as Heather writes in part:

“all of us have a responsibility to shift the way we react when faced with uncomfortable social situations. All of need to scoot over and make some room for people to respond in a way we’re not use to.”–Heather Avis

One of my favorite parts of this book is the chapter entitled “Make room for the Wildflowers.” Much of what we do in life is like a garden– planted in nice, neat rows. Take for instance inside school classrooms where the desks are all lined and in sync. Is there any space for the wildflowers to grow in these tidy rows? This metaphor opens up the dialog about inclusion and different abilities working alongside in the same classroom. Can we scoot over and make some room to let the wildflowers grow amongst the seamless rows and see the value of inclusion and all abilities?  I can speak from experience that my son, Nick brought great value and taught lessons of patience, compassion and unconditional love to his peers while in the inclusion classroom setting. He continues to do so as a young adult with his interactions out in the community and at his adult developmental day training program.

There is so much more to this book and you will have to read it to find out for yourself. Scoot Over and Make Some Room is a call to action to shout the worth of people who are left out and misunderstood. Every parent, extended family member, physician, educator, pastor and others will gain a deeper understanding of how to do a better job to adjust, sit and listen in order to learn how to find a way to make room for everyone to be valued, accepted and included in our society.

That’s what is in my noggin this week.

 ~Teresa 🙂

Follow Nick:

Facebook-Instagram-Pinterest @Down Syndrome with A Slice of Autism

Twitter @tjunnerstall

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Heather Avis writes from the heart about all the things she wishes the every day person knew about inclusion. This book applies to teachers, parents, siblings and simply everyone who wants to change the way we see inclusion in the world around us.

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

Blog #229~The Mighty Article: Navigating the Covid-19 Lockdown With My Son Who Has Down Syndrome and Autism

Blog #229~The Mighty Article: Navigating the Covid-19 Lockdown With My Son Who Has Down Syndrome and Autism

Here is an article that I wrote for The Mighty that was published last week about navigating the Covid-19 lockdown with my son Nick who is 26 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD):

https://themighty.com/2020/05/supporting-person-down-syndrome-autism-covid-19/?utm_source=engagement_bar&utm_medium=link&utm_campaign=story_page.engagement_bar/

Nick and Al Walking Covid-19

A silver lining in the Covid-19 lockdown, Nick and his Dad are taking long walks together when the weather prevails. I think a lot of families are doing this, how about yours? 🙂

Last Tuesday, my book A New Course: A Mother’s Journey Navigating Down Syndrome and Autism launched and is available on Amazon https://amzn.to/2W3Un6X

A New Course Book Cover multiple books

It was a full day of virtual activities with some fun surprises. I will share more about the launch events on next week’s blog. A New Course is now ranked #25 in the ENTIRE Disability Parenting category and #2 in Hot New Releases in that category. 🙂  Let’s keep the momentum going. You can do so by leaving an Amazon review–That is the BEST way to help get this book out into the world.

Amazon Reviews

 

My mission is to help families, medical professionals, educators, DS support groups and every individual to truly understand this journey with my son– and to make things easier for everyone who is trying to help individuals navigate a dual diagnosis!

Thank you for all your support both in A New Course and this blog that has helped so many people learn more about DS-ASD.

That’s what is in my noggin this week!

~Teresa 🙂

Click on my website below for Social Media, book and blog information:

LOGO TRANSPARENCY (5)

 

 

 

 

Posted in Autism, Down syndrome, Dual Diagnosis Down syndrome and autism, Fun Side of Nick, Recreation/Leisure and Special Needs

DS-ASD~ Summer Vacation Highlights

DS-ASD~ Summer Vacation Highlights

OBX flags 2019

We are back after a two week vacation from Virginia and the Outer Banks, NC. It was so relaxing to be off the grid and enjoy time with family. My son Nick is 25 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). As a family, we have always made a commitment to travel with our son. It can be challenging for a child with special needs to navigate airports, hotels and unfamiliar venues. But there are things you can put in place to make vacations go smoother…..

In my last blog entry you can access my top 7 vacation travel tips for families: https://nickspecialneeds.com/2019/06/17/ds-asd7-vacation-tips-for-special-needs-families/ 

Here are some of the highlights from our summer vacation in Virginia and the Outer Banks (OBX):

In Virginia, we enjoyed the wonderful hospitality of Nick’s Aunt Ali and Uncle Ron with beautiful views, kayaking on the James River, great food and relaxing in the peaceful country…..

 

Highlights from the Outer Banks, in Duck, OBX:

At OBX we enjoyed beach and pool time, great company, delicious meals and a nice birthday celebration dinner on the sound side of OBX. Nick did well tolerating the sandy beaches this year, and spent more time than ever with us as a family!  We put Nick in tennis shoes to make his way out on the hot sand, with a texture that tends to bother him from a sensory standpoint. He did well hanging out both under the umbrella and out at the water’s edge……….

Nick and Dad OBX beach 2019   Nick and Anna OBX 2019

Dinner on the sound side of OBX at Aqua Restaurant and Spa, including Nick with his Dad & Mom, Uncle Ron & Aunt Ali, Cousins Anna & Sam and Nick’s brother and girlfriend Hank & Kristin…..

Aqua Restaurant and Spa features excellent food, wine, spa treatments and sunsets. Thank you both- to my son Hank for treating me to a pedicure overlooking the sound, and to Ali for the relaxing (and much needed) Swedish massage. As a mother of a child with special needs, it’s crucial to take time for some TLC and pamper yourself. Moving forward, I’m going to make it a priority to do this more than once a year on my birthday. It is good for the soul! 🙂

Sunrise at Duck, OBX….

OBX sunrise 2019

We are very grateful and blessed to have the opportunity to spend vacation each summer with Ali and Ron hosting in Virginia and OBX. Anna, thank you for cooking and introducing us to some wonderful & tasty vegan dishes. The familiar venues help Nick feel secure in his surroundings. This predictability helps him to be less anxious on vacations and makes for a more relaxing experience for all of us.

That’s what is in my noggin this week.

~Teresa 🙂

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