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 🙂

To see more pictures of the trip and Nick click below to follow on social media:

Instagramhttps://www.instagram.com/nickdsautism/

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Facebook Page and Pinterest- Down Syndrome With A Slice Of Autism

 

 

 

 

 

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

DS-ASD~7 Vacation Tips for Special Needs Families

DS-ASD~7 Vacation Tips for Special Needs Families

My son, Nick is 25 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). We’ve had our share of family vacations traveling across the country and overseas.  It’s not always easy and breezy, but with some planning and preparation, your vacation can be less stressful and fun for everyone.

7 Vacation Tips for Special Needs Families:

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.

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 restaurant 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.

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. Being prepared, planning ahead and staying flexible will help families have a smooth and enjoyable vacation this summer.

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

~Teresa

Follow Nick:

Instagram @nickdsautism

Facebook and Pinterest @Down Syndrome With a  Slice of Autism

Twitter @tjunnerstall

 

 

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

Special Needs Books and Resources from a Father’s Perspective

Special Needs Books and Resources from a Father’s Perspective

Father’s Day is this Sunday. Here is a list of books and resources from a father’s perspective. Click here to view:

https://nickspecialneeds.com/?s=blog+%23147

Wishing all the Dads out there a very Happy Father’s Day!

~Teresa 🙂

Follow my son Nick, age 25 with a dual diagnosis of Down syndrome and autism (DS-ASD):

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, Recreation/Leisure and Special Needs, Resources for Special Needs

Special Needs Summer Program Ideas

Special Needs Summer Program Ideas

This week, I’ve provided a list of some summer program ideas and links for children with special needs. My son, Nick is 25 years old and has a dual diagnosis of Down syndrome and autism (DS-ASD). Over the years he has participated in a variety of programs.  Here is a blog I wrote a couple of years ago, highlighting some great programs for individuals with special needs:

Click here to view:
https://nickspecialneeds.com/2017/06/12/blog-176-special-needs-summer-recreation-programs/

Honesty, I was uncertain about attempting some of the programs, given Nick’s dual diagnosis of DS-ASD. It’s important to at least try new things and keep expanding your child’s horizons. As the saying goes, “you never know, until you try it”. 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

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 Down syndrome, Down Syndrome Awareness, Dual Diagnosis Down syndrome and autism

World Down Syndrome Day: 3/21

World Down Syndrome Day: 3/21

On March 21st, World Down Syndrome Day (WDSD), we celebrate and raise awareness around the world of what Down syndrome is and the vital role people with Down syndrome play in our society.

World Down-Syndrome-Day

Trisomy 21, also known as Down syndrome occurs when there are 3 copies of chromosome 21. That is why WDSD is held on March 21st each year.  This day highlights the importance of promoting awareness, understanding, inclusion and acceptance for individuals with Down syndrome.

Read 3 easy ways you can help to promote WDSD:

https://nickspecialneeds.com/2018/03/19/blog-200world-down-syndrome-day/ 

Let’s celebrate the uniqueness of individuals with Down syndrome on 3/21 and everyday!  Don’t forget to rock your funky socks on Thursday. 🙂

That’s what is in my noggin this week.

~Teresa 🙂

Follow my son 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, Education and Special Needs

DS-ASD~Evaluating Your Child’s Progress Mid School Year

DS-ASD~Evaluating Your Child’s Progress Mid School Year

progress report

Spring is right around the corner. This is a good time to check in and see how your child is progressing with IEP goals and behavior. A child with a dual diagnosis of Down syndrome and autism (DS-ASD), may have additional deficits in speech and challenging behaviors.

Mid-year is a critical time to re-evaluate the teaching methods and current goals set in place, to help your child succeed. Here are five things parents can do now, to take action before the school year ends: https://nickspecialneeds.com/2018/03/12/blog-199take-action-before-the-school-year-ends/

Keep the lines of communication open with school staff, review IEP goals and progress and collaborate with the IEP team to ensure supports are in place so your child will have a strong finish to the school year.  Checking on your child’s progress will help you and the school staff be on the same page at the next IEP meeting.

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

DS-ASD~Teaching Job and Functional Living Skills

DS-ASD~Teaching Job and Functional Living Skills

There are many jobs and functional living skills that can be taught to individuals who have a dual diagnosis of Down syndrome and autism (DS-ASD).  My son Nick is 25 years old and has several jobs both at home and in his adult developmental training day program.

Nick working at his day program….

Nick cleaning aid

Nick helping out at home…

Nick vacumme thanksgiving

One of the keys to unlocking your child’s potential, is to look at their interests and strengths.  Figure out what motivates them, and build jobs around those areas.  To read how to teach job and functional living skills click on the link below:

https://nickspecialneeds.com/2017/07/31/blog-179down-syndrome-and-autism-unlocking-your-childs-potential/

It’s never to early to start teaching job and functional living skills.  Start small and build around the interests and strengths of the individual.  Include lots of praise and rewards.  These skills will help to develop confidence and independence.

That’s what is in my noggin this week.

~Teresa 🙂

Follow Nick:

nick-senior-alarm-pic

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 #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